Known by God: A story about a child born with diability as told by her mother Jennifer Gray

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KNOWN BY GOD?
INDEX
1. Details for Publishers 1
2. Preface and Introduction 3
3. The Birth of a Disabled Child 5
4. Medical Facts about Spina Bifida and Hydrocephalus 8
5. Difficult Decisions 10
6. Coming Home 15
7.Medical Help 18
8. Communications 20
9. Moving On 27
10. Growing Up 32
11. Conclusion 36
12. Footnotes 37
13. The Groningen Protocol (2004) 38
14. Amen. A postscript. 42

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TITLE: KNOWN BY GOD?
AUTHOR: Jennifer Gray
CATEGORIES: Medical ethics, Christian meditation, Disability c.23.000 words.
SUMMARY: This book was originally written and copies circulated privately to churches and
communities in both France and England ten years ago. It was well received. Since that time
there has been further evidence that infanticide amongst severely disabled newborn babies
is still being practiced in Europe (see footnote at the end of the book).
This book looks at the problem of disability, the ethics of non -intervention or even assisted
death in the newborn, and meditates on thoughts and questions that most people feel
when confronted by disaster and pain. From this meditation, come some conclusions, but
certainly not all the answers. The purpose of the book then, is to inform the public about
the facts of certain aspects of obstetric and neonatal care. It shares with the reader the
journey through a maze of conflicting interpretations of what is ethical, what is right, and
what is loving, by describing the life of one such baby. It is the story of a little girl, born with
severe spina bifida in 1978; who despite being deprived of food and water after her birth in
an attempt by doctors to end her life ‘peacefully,’ grew up in a normal family, attended
normal school with her brothers and received her Bachelor’s degree in forensic science
eleven years ago.
The religious style of the book might be a stumbling block for some readers. The inspiration
for the book came following a long period of meditation on the kind of suffering often seen
by the author during her work as a doctor, later experienced by herself and her family
following the events surrounding her baby’s birth.
The philosophical question remains: how may one describe and judge these events most
effectively? For many this would be through humanist and moral language. The author has
chosen to adopt a religious argument as it reflects more truly her thinking. But either way
the question remains – what do we think about suffering? How do we deal with this
problem? Is it possible to reconcile in religious language the goodness of creation, the love
of God that is taught in all major faiths and especially in Christianity, with the presence of
suffering amongst the innocent? The subject is dealt with in a personal style, including
prayers written by the author during the production of the text. These are in small italics.
ILLUSTRATIONS: COVER: (or frontispiece): Susan in 1981 aged nearly three. End piece Susan
2011.

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PURPOSE: It seems timely to formally publish this book so that more people can be made
aware of distressing practices apparently still being carried out in obstetric units here and
abroad. We need to question again the decision of those doctors who make decisions to end
the lives of babies with spina bifida, and to bring this practice to the attention of people of
all faiths, or none, to encourage debate and positive action before the same practice begins
in England again, as it was done in 1978. The book might also help others to reach some
resolution in their thinking about the dilemma in trying to resolve the dichotomy of the
loving God who sometimes doesn’t seem to care, and the continuing faithfulness of those
who overcome these doubts.
THE AUTHOR retired thirteen years ago and was living in France until 2013. Before this, she
was a doctor in general practice in Birmingham for 28 years, and later, a Police Surgeon. She
also has degrees in music and art history. She was on the Editorial Board of World Medicine
and has written articles in the medical press as well as book reviews for the British Medical
Journal. Since her retirement she has also written an e-book novel, ‘St. Agnes-by-the-Dam’;
two published anthologies of poetry: ‘Police Surgeon’, and ‘Too Late to Plant Trees’; other
Christian and meditative poetry, many humorous poems and poetry for children; an
account of the 19th
century Birmingham Baptist minister Thomas Swan; twelve short
stories, two one-act plays; a thesis and small book on the little known artist, Theodore
Garman, together with an article about him, published in the British Art Journal. She has
been writing ‘Known by God?’ for several years.
*******************

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Preface
It is 2012. I have just put down the phone. The call was from our daughter, Sue, who lives in
England. She is 34 years old. She wants to check if we are OK. Here in France we are in the
middle of what is called a canicule, a heatwave, which means that today we face
temperatures of up to 40°. It’ also hot in the south of England where she lives.
She is worried about our health, in this heat. She warns us to have plenty to drink, and to stay
indoors until its cooler. She’s like that. She would like to be here with us, but that isn’t
possible. She is too busy at work. She also committed to driving a friend to hospital daily to
receive radiotherapy. She sends all her love and tells me to remember to keep a hat on if we
go outside.
Practical, loving, and full of fun and enthusiasm. Work, partner, friends, dogs, making
jewelry in her rare free time, her life is truly full and fulfilled. She gives so much to so many
people.
She has gained a level of optimism for life far more than anyone else that I know. She is truly
blessed. She is also disabled. This is her story.
Introduction
It seems an appropriate time to record the progress of one disabled child’s experience, the
effect on her family and later, her influence on others in the world around her. Once again,
the subject of allowing the ‘euthanasia’ of disabled babies is in the news. In the Netherlands,
euthanasia remains technically illegal for patients under the age of 12. However, about eight
years ago, Eduard Verhagen documented several cases of infant euthanasia. Together with
colleagues and prosecutors, he has developed a protocol to be followed in those cases.
Prosecutors will refrain from pressing charges if this "Groningen Protocol"(see endnote) is
followed.The Pope has condemned such practice, the Anglican church is ambivalent. Society
is also beginning to accept the legal abortion of fetuses with minor defects like cleft palate, in
one case after the legal time limit of 24 weeks. Perhaps the telling of this account of a child’s
life will have some influence in how difficult decisions can be made.
The story begins in Birmingham in 1977. It was a glorious summer that year and we grew
spinach in our garden. This would turn out, unexpectedly, to be a useful scientific fact. Our

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daughter Susan was conceived that summer and born in April 1978. To our great distress she
was born with a severe physical disability – spina bifida and hydrocephalus. Why?
After the initial shock I found myself trying to find answers. Not just medical ones, although
there were plenty of questions there, but spiritual ones. It didn’t help when one of my patients
was to tell me, in what he must have thought was a helpful way, that it was all due to sin.
Wow! Yes, I have my faults, but I think we had lived quite an ordinary, healthy life until then
and the remark jolted me. If someone can honestly believe in a God who would impose that
on a baby, I had no more interest in religion.
‘You created every part of me;
You put me together in my mother’s womb’
(The Old Testament, Psalm 139, verse 13)
Since that morning in the surgery, I avoided facing the argument about the non-medical cause
of spiritual, mental and physical suffering . I was a doctor, a general practitioner, and saw
many people who had suffered almost beyond endurance. It made me angry as well as sad
and usually when confronted with any difficult passages of scripture that related to such
issues I tried to rationalise them. God supposedly creates all things, and according to the
Bible ‘knows us in our mother’s womb’. He doesn’t step in to prevent evil, particularly if the
evil is primarily the result of man’s foolishness or disobedience, but surely he is not
responsible for inflicting pain and misery on a new-born baby?
For years I revisited this argument frequently, never finding solutions.
Since we retired to France some years ago, I have belonged to an Anglican Fellowship in the
Chaplaincy of Aquitaine. Last year, while studying a text in a home group, I had to face these
questions again. I found the words almost unbearably painful to read, as they dealt with those
passages of scripture that I had always found hard to accept. Further on in Psalm 139, in
verse 15 the psalmist (probably David) declares:
‘When my bones were being formed, carefully put together in my mother’s womb, when
I was growing there in secret, you knew that I was there- you saw me before I was
born’.
How could I explain this verse to a child with a spinal malformation?
Can God be held responsible for deformities? Why was our daughter born with such a
severe disability?
I decided that it would help me in my seemingly lifelong spiritual journey to write about
these dilemmas, recalling those dark days early on when our baby was thought to be unfit to
live.
And as I was writing this account of the birth and childhood of our disabled daughter I felt I
should record my thoughts and prayers that seemed relevant to the text. These are shown in
italics.
I hope that this will be a helpful book for many people who share my feeling of uncertainty
about religious faith and may answer some of their doubts. It will, I hope shed more light on
the present withdrawal of treatment for certain groups of people and the many ethical
situations that are presented to doctors to solve.

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Lord, I am writing this because I believe it is your will that all the facts, the sorrows, the joy
and the pain that came from the birth of our daughter might be shared by others. Many
people find it hard to make sense of this world and its imperfections. Those who trust and
want to live their lives in faith, also have questions about suffering. Give me courage to face
up to the truth about imperfection as it is revealed by my reading, thinking and writing and
let me trust that with your help this truth will be found. Sometimes, from our limited
perspective, we cannot believe that you always answer prayer. But over the years mine have
been answered, and I am thankful.
The Birth of a Disabled Child.
‘Your hands formed and shaped me…’
(Job 10:8)
During my pregnancy I had realised that something was wrong with my baby. We already
had a two year old son, Paul, and that first pregnancy had been straightforward. But this one
was different. At 25 weeks her growth was slow and she lay in an extended breech position –
often an ominous sign. I use the gender ‘she’, although of course, in 1978 it wasn’t possible
to assess the sex of a baby before it was born. But I won’t use the term ‘it’ and it will soon
become clear why that should be. My doctor at the hospital at that time was unconcerned and
felt that my dates were probably wrong and that she would eventually ‘catch up’. I didn’t
correct him, but I knew for several medical reasons that this was not the case.
I had not received any medical tests to exclude foetal abnormality. At that time it was not
routine practice, but I thought that I might be advised to have amniocentesis to look for
Down’s syndrome, as I was an older mother. I can remember coming home from the booking
clinic at the hospital and joking with my husband that I must look younger than I was, as the
test hadn’t been offered! This test would also have rung alarm bells in a case of spina bifida,
leading to all sorts of other investigations and terribly hard decisions perhaps leading to a
‘therapeutic’ abortion.
Two weeks before she was born, the diagnosis was almost certain, as tests had shown a mass
on the baby’s spine. The obstetrician suggested immediate delivery and asked me to come
into hospital the next day. He looked me straight in the eye and suggested that if, after the
womb had dilated and he could feel this mass manually and confirm it to be spina bifida, he
would make sure he would ‘get it out as quickly as possible’. For most of the time that I was
in hospital our daughter was denied a gender. I think it made it less hard for staff, to deny her
this sign of human life.
I was stunned but had doubts about the diagnosis. So I insisted that the baby be treated in
exactly the same way and with the same respect as one would in delivering a normal child.
The next day we got to the hospital and I was invited to go immediately to the labour ward,
even though I was not, of course, yet in labour. After assessments by an anaesthetist who
happened to be a friend whom I had trained with, it was decided that I would stay in
overnight in a ward, and have my baby the next day. The diagnosis still seemed to be unclear,
but there was a sense of urgency not to allow me to go to full term.

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We had decided that my husband would not be present at the birth. In those days it was less
usual for the father to come, and besides, I thought it would be better if he carried on at work
as usual and looked after Paul. So he only came to the hospital when the baby had been born.
April 22nd
1978 is still very clear in my mind. My overwhelming feeling was one of guilt. I’m
not sure why, but I was obviously causing a certain amount of discomfort to the medical staff
who seemed to speak in whispers at the end of the bed.
It was not usual then to include patients into any medical discussion. I felt I needed to
apologise to someone, but I didn’t know to whom, or indeed why. First of all there were
difficulties in putting in the spinal epidural, an anaesthetic, so I apologised. But the next
strike was perfect and the delightful numb sensation flowed down from my waist where pain
was beginning. The drip containing the drug to induce labour had been set up, and was
starting to work. At one stage the consultant examined me and confirmed that the diagnosis
really was spina bifida. He turned to the staff and ordered that the drip should be turned right
up to speed up delivery.
I was appalled, as I knew that this could have a catastrophic effect on the baby, causing foetal
distress – and perhaps death. All the monitors were switched off. Was this a late termination
without consent? I was unable to question their decisions, and I was not involved in any
decision-making. In those days a more authoritarian approach was practiced and the
consultant’s word was taken for granted, not challenged.
At no time had I expressed a wish that my handicapped child shouldn’t live. In fact, I was
firm that I wanted the delivery handled “humanely”, as it would be for any other baby. I had a
terrible fear that any interference might cause unnecessary suffering or even the baby’s death.
I had read only a few weeks before of a baby that had been diagnosed as having
hydrocephalus (a condition that often accompanies spina bifida) and the plan had been to
destroy the baby’s skull by ‘needling’ it (destroying the skull to minimise its size) while it
was still inside the womb, in order to ease delivery. Thankfully, in that case that procedure
failed and a normal baby was born. The account of that case (from a leading medical journal)
led me to doubt the diagnosis of our baby’s condition. All I wanted was the most appropriate
delivery for a breech presentation.
Lord, this sounds as if I am bitter and angry, but you know that at no time did we ever feel
hostility towards the staff. I believe that what happened in that hospital was done in
compassion for us. It was just that their interpretation of the case, and ours, were different,
and there was little true communication between us. I need now to explain the attitudes of the
people involved in order to help describe their point of view. So please help me to search my
memory and make sure that account is truthful. Thank you for being there with me then, and
helping me now as I record the baby’s birth.
In due course the baby was delivered as a breech. Silence, broken by someone saying in a
tone of relief ‘the foetal heart has stopped. It’s alright, it’s a stillbirth’. This is a very strange
thing to hear when you are giving birth. One of the nurses began to cry. The atmosphere was
tense. I was offered some diazepam to calm me, but I really felt that I didn’t need it, but I
think the nurses could have done with some. Throughout I could feel a complete calmness,

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and could even imagine my father with his zany sense of humour saying ‘Well, you’ve really
done it this time!’
I apologised again, but it didn’t seem to help. Perhaps it was a miracle happening, but as soon
as I knew the baby’s plight (and indeed our own because I sensed that her care would be a
major concern throughout her life), I began to have thoughts about how beautiful the world
was.
I was particularly drawn in my imagination to our home, and to all the things I loved about
it – how lovely the sun looked when coming through the stained glass windows over the
stairs; how clean the house smelled when I’d polished the staircase; how many flowers we
had in the garden then; how glad I was that I had studied music and knew what a mystical
magical world is there to be found just sitting and listening; how a friend told me of a woman
who had been bed-ridden and had not left her room for years, and yet was a source of
inspiration to the many people who brought their problems to her. In short, I was given a
vision of a whole range of the potential of the human spirit to love and to be loved, and was
at peace. I thought that perhaps something might be retrieved from this disaster after all.
Lord, I thought of the everlasting arms, which I now know surround us in our greatest time of
need. Your presence in the hospital in those first few awful days helped me to keep a grip on
what was happening even while I couldn’t understand why it should be, and what might
happen next to our baby.
The baby suddenly cried, then went silent. The delivery room also went silent. Someone said
‘I’ll take it away’. The one minute and five minute examinations took place in the next room
but I was told much later that her Apgar scores were extremely low.
(For those who are not familiar with obstetric or paediatric jargon, Apgar scores are the
ratings given to assess the five important vital signs. Appearance (skin color), Pulse (heart
rate), Grimace (reflex irritability), Activity (muscle tone), and Respiration.Each sign can score
2, so the best total is 10. The first reading is at one minute and the second at five minutes.
Our baby’s readings were ominously and dreadfully low, at 0 and then 1. Usually the
outcome from Apgars as low as this would indicate a prognosis of severe mental retardation.
I was fairly sure that the low readings were the result of the medically engineered precipitous
and dangerous birth, and not from any pre-existing medical condition. Until I had been
induced, the baby had been apparently quite comfortable (but not kicking because of the
neurological damage she had suffered because of her condition).
The next day happened to be my birthday. My husband, who had been waiting outside during
the delivery room after all, and had been so supportive afterwards, arrived in the hospital with
a birthday cake that he had baked himself. It brought a welcome sense of normality to the day
and we began to feel more positive.
During the next couple of days I felt ostracized by some of the staff, who seemed unable to
spend time with me, although I don’t think I was a difficult patient. It was as if they were
embarrassed and upset and unable to share their feelings with me. Also there were a lot of

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agency nurses on duty who had not had time to ‘bond’ with any of the patients, but just
followed the rules.
The first night I asked for help to go to the toilet (it is often a problem to pass urine after an
epidural) and was told I must not leave my bed (quite sensible, as it’s possible to pass out
from dizziness following the procedure). But no alternative suggestion was offered, so
instead of risking rupturing my bladder I decided to walk to the bathroom instead. The
telling-off was just like being back at school!
We had the opportunity of speaking to a paediatrician, who gave us a grim scenario of our
daughter’s future. She would probably have severe mental retardation ‘nothing better than a
vegetable really.’ She would be unable to stand or walk but might be able to crawl. She
would have no bladder or bowel control. Her head had already started to enlarge, and there
was no doubt that she was developing hydrocephalus (water on the brain).Our doctor said
that no-one would consider treating this with a valve to drain away the excess fluid, as she
was too severely handicapped.
We had no-one really to discuss these bleak facts with. There was no social worker around
and the nurses seemed as numb as us, and very busy.
We were discouraged from going to see our baby, but then another woman on my ward, a
kind and ‘down to earth’ sort of person told me to go and look at her ‘She’s the prettiest one
there!’ she smiled. So we went and we finally saw our daughter.
We were amazed! She looked so beautiful, waving her little arms around in the air, flapping
the sleeves that were much too big for her. She was very still from the waist down, and we
knew that she would never have movement there.
I prayed for her from the depths of my heart.
She is wonderful. Her hands and her arms seem to work well. Help her, help her…
Then I remembered some poetry I had read once:
‘In this Little Thing I saw three properties.
The first is that God made it,
The second is that God loveth it,
The third, that God keepeth it.1
It had been written by that wonderful Christian mystic of the 14th
century, Julian of Norwich.
This led me to think how much this baby might be able to offer the world with her eyes, ears,
hands and voice. After all, there was so much of her that still worked.
There was great concern that she would not live very long. The vicar of our local church, The
Church of the Ascension, Hall Green, came into the hospital and baptised her, and although
she was only wearing a plain hospital baby gown, I thought she looked lovely, but so tiny, so
vulnerable. She was named Susan Amanda. The second name had been my mother’s, who
had died some years before. It also means 'worthy to be loved'. People’s response to her birth
took us by surprise. None of the usual gifts were sent, presumably because people realised
that toys and clothes might not be needed, but I received many, many flowers (large bunches
of spring flowers still bring back poignant memories). But one friend gave me a small wicker
basket with homemade bread, which seemed to radiate the significance of life.

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Medical Facts about Spina Bifida and Hydrocephalus
Spina bifida is one of several congenital abnormalities involving the spine and nervous
system which come under the general title of neural tube defects. Almost before the mother is
aware that she is pregnant, the deformity will have occurred. The spine and spinal cord are
normally open in the embryo until about the fifth week after conception, when they then wrap
around and close forming the real spine with the spinal cord inside. If this process is delayed
in any way, the moment of closure of the spine does not occur and at its worse manifestation
the child is born with an opening, like a large ulcer, on its back sometimes with neural tissue
showing through. Often the back leaks cerebro-spinal fluid (CSF), and obviously there is a
very great danger of an infection being carried through this ulcer to the brain causing
meningitis.
Usually the baby undergoes surgery immediately to close the opening. Sometimes following
surgery some improvement in restoring a viable nervous system in the affected part of the
body can be achieved, but usually, depending on the severity of the lesion and the spinal level
at which it occurs, a person with spina bifida will probably be either totally paraplegic
(paralysed in both legs) or have difficulty with walking, requiring crutches. They will have
interference with bladder and bowel function, and diminished or absent sensation from the
level of the lesion down the rest of their body. This in turn can lead to pressure sores or burns
on the legs if they are not protected. Closing the back can lead to another related condition,
hydrocephalus, or water on the brain. This is because other structures higher up the spinal
canal or in the brain are also malformed and can cause disruption to the normal steady flow
of CSF around the brain and spine. Whilst there is leakage from the wound a steady balance
is usually achieved, but once the wound is closed the pressure can build up causing brain
damage and a steadily enlarging skull.
Until the middle of the 20th
century, the most severely afflicted children with spina bifida
died, if not at birth, then in early childhood. If hydrocephalus was also present, that, too,
contributed to the death rate. There were no antibiotics to treat related kidney infections
(common because of urinary incontinence and poor hygiene), or to treat meningitis, acquired
through infection getting into the spinal fluid and on to the brain, through the large open
wound on the back where the spine and skin has not formed properly. There were few aids
and almost certainly no schooling for such sad cases. Some children whom I saw in a local
long-stay paediatric hospital during my medical training, and who were suffering from the
most severe aspects of the condition, had grossly large, distorted heads, were severely
subnormal from the raised pressure inside the skull, and even had skin ulceration of the scalp
from pressure sores. They were also blind.
In 1958 the Spitz-Holter valve was invented which when placed into the brain of the affected
child drained the excess fluid and restored equilibrium of CSF so that the head did not
become very enlarged. But in the early days the procedure was fraught with difficulties, and
infection of the valve, or shunt as it was called, often led to meningitis and subsequent mental
or physical disability, or death. Some doctors believed it better not to use this procedure, but
those who had been denied surgery, like the ones I had seen, ended up horrendously afflicted.

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Once the valve had been invented, some alleviation was achieved, and then surgeons found
ways of closing the spinal lesions and more patients reached young adulthood. But by the
1970’s some centres were auditing the efficacy and economic viability of such treatment.
Quality of life issues began to take a more significant role in the arguments used. As doctors
saw it, the patients they had treated were living blighted and illness-ridden lives, and were
often very obese, smelly, and mentally retarded. They also noted that these patients were
expensive, and, (understandably), used hospital and social services extensively. Their
questions were: what had they achieved? Wouldn’t these lives have been better terminated
at birth?
In the late 1960's, an eminent paediatrician from Sheffield, John Lorber, analysed all the
relevant findings, and proposed categories relating to the severity of the disease. The fifth
category was the one that our baby matched – a high lesion that started in the thoracic level of
the spine (well above the waist-line) with no movement in the lower limbs, and
hydrocephalus. The recommended ‘treatment’ for babies in this category was nursing and no
active treatment, including feeding. Water only was given. Interestingly, another doctor, in
Liverpool, Professor R.B. Zachery, disagreed with these criteria and continued to look after
these children long after Lorber’s work was generally recognised.
Today this is considered history and the 'Lorber criteria' are no longer used.
No-one at the time of Susan’s birth was sure of the cause of the condition. Someone came
from a University Department with a questionnaire to see if I had taken any medication that
could have caused it. Staff in Occupational Health seemed interested that I had worked as a
surgical house officer within the past five years, and been exposed to anaesthetic gases, but at
that time no-one really understood the cause of neural tube defects, except that it might be a
deficiency of the vitamin, folic acid. But in our case that was unlikely as we had been living
on a diet of home-grown spinach (a rich source of the vitamin) for the whole of the summer
that our child was conceived.
Both my husband and I are of Welsh origin, which was another factor. The incidence of spina
bifida is much higher amongst Celtic people, and even amongst those Celts who had moved
away from their land, like the Irish in America, there is a higher incidence. This suggests a
genetic cause rather than an environmental one. I had also had a severe viral infection when I
was about 5-6 weeks pregnant and some doctors thought that this could have triggered the
late response to the mechanism that closes the neural tube and vertebrae at about that time.
Folic acid has since been given routinely to women before they become pregnant in order to
reduce the risk of a neural tube abnormality, and that, together with abortion on demand for
disability, following the routine use of the measurement of blood alpha foeto- protein (AFP),
has greatly reduced the number of live births showing the condition.
Difficult Decisions

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‘ Do not utterly forsake me.’
(Psalm 119: 8)
We couldn’t understand why we kept being ‘reassured’ that our daughter would be dead
within a week. There were murmurs of the risk of meningitis that would kill her. The lump on
her back was in fact an open wound that showed layers of spinal tissue inside. She was so
small that the dressings on the wound were contiguous with her nappies. So it was feasible
that germs from excrement might pass into the wound if it were not kept clean. But how
could the doctors and nurses be so certain of this? After all, she had survived a traumatic
delivery, so she was tough. She looked healthy, even if she was disabled by paralysis. So
why…?
Some months before Susan's birth, I had been following some correspondence in the Times
between an eminent lawyer interested in ethics, and a paediatrician in a Midlands hospital,
not Birmingham. The debate had been on the problem of dealing with babies born with
severe abnormalities, and included a discussion about the option of infanticide in the worst
cases. Again I felt it to be a strange coincidence that I had followed that correspondence,
since I usually never had time to read much during the week.
It seemed that some members of the medical profession were making arbitrary value
judgments and impossible predictions about certain babies, certainly those that seemed to be
so disabled that they might never have the chance to lead a ‘normal’ life.
‘The world defines greatness in terms of power, possessions, prestige and position’2
Most doctors as a group are generally clever, ambitious, successful people from backgrounds
where achievement and material success might be the main goal in life. The idea that a
person can live (or exist) contentedly with no ability to move independently, to control bodily
functions, to earn a living, to have children, is so impossible that the simplest and kindest
solution must seem to be to end such an impoverished existence before it really begins.
This definition of a successful life widely held by society and based on materialist values is, I
believe, false. I think that the true definition of success is that of one who has adapted to his
own lifestyle and is content and able to communicate his inner peace. People who cannot
adapt and be flexible, who don’t believe in ‘live and let live’, and who want to tidy up society
eugenically, are, I think, the ones who are disabled for they have lost their humanity and their
spirit. Many excuses are given for the efficacy of abortion and infanticide of the disabled.
The cost of care is often quoted, but in reply there are still some with a moral conscience.
‘We are constantly bombarded with the costs of keeping the handicapped and dying
alive. I submit that the cost of all the handicapped, mentally and physically, is but a
drop in the bucket compared to the cost of the morally handicapped.’3
We try more than ever in these technical days to control our destinies. We have conquered
many diseases and improved the social environment of our population. But in terms of human
happiness, I am not convinced that we are improving our lives by making it easier to get rid
of our social problems if it means losing our humanity in the process.

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Lord, you know that disability will often determine which social category you end up in, and
sadly, too often, it is one of the lower ones without any power or prestige or position. But is
this actually a disadvantage? In the eyes of the ‘me-first’ world, definitely it is. But in your
eyes, the world is turned upside down and the disadvantaged and the meek will ‘inherit the
earth’. Bless all those who lack worldly things. Strengthen and support the meek, the poor,
the disabled, and those disadvantaged in the eyes of the world by any other affliction.
As I sat next to our daughter’s cot I recalled the correspondence that I had read in The Times.
I needed to get some real answers quickly. Was she really about to die from ‘benign neglect’?
I was unable to see the consultant, but when his registrar came to do the ward round I told
him of my fears for the future of our daughter. I particularly asked him about how she was
being fed. I had been sad that I had not been able to feed her myself, but at some time during
my pregnancy I had read an article in a woman’s magazine about a mother who had had a
disabled baby. She was distressed and tried to breast-feed it. Apparently she had been led to
believe that ‘the authorities’ were so appalled that they arranged a psychiatric assessment for
her, and she had the baby taken away from her. Consequently I had not even mentioned to the
nursing staff at the hospital, as I should have done, my great desire to try to feed my baby. I
was afraid that my mental health would be called into question too.
The registrar was a nice young man, recently out of college, and a Christian. He looked at
me seriously and told me that the medical decision had been made not to feed her but to let
her die in peace, in hospital. He was obviously uncomfortable with this, but he seemed unable
to express any personal feelings, as he was part of the team that had made that decision.
Infanticide for severe disability was indeed being practiced in Birmingham.
I was shocked and horrified by the registrar’s admission. It came as a complete surprise. No-
one had asked us about our religious or ethical views on the subject. We hadn’t been
consulted at all. Perhaps if I had been more positive she would not have been left without
food. Understanding now the urgency of making a decision immediately, I thanked him for
his honesty and phoned my husband, asking him to come in at once – we had some thinking
to do! I cannot remember praying over this, but I think we both knew without a doubt that we
could not leave her in hospital to die without food. I know I was thankful that I had read those
letters to The Times so many months ago, as I didn’t usually have the time to do so, but on
reflection I know that the knowledge I gained from them helped to save her life, as otherwise
I would have had no reason to know that this kind of ‘care’ was happening. Generally,
parents were not consulted then as they would be today. Later, this state of ignorance was to
be challenged:
‘Parents have a right to participate in decisions about their infants and doctors should
respect this right.’ 4
But I believe that no-one, not even the family, has the right to decide to end the life of their
child, even when the future might seem hopeless. Not many would want to, once they had
bonded, which explained the removal of our baby to the ‘special care’ unit. One parent,
writing after the death of his six-year old mentally handicapped son has written:
‘Despite people telling us that we must be ‘relieved’, we greatly miss our son. We
happened to love him despite his double incontinence and total lack of responsibility. He

14
was another person – not us, you or anyone else... In far too many cases, doctors make
melodramatic announcements of handicap to parents of a new-born baby and little
more than 24 hours is often given for them to consider some horrific “non-treatment”.
Far more interesting are the great advances in the treatment of handicap now being
pioneered on unborn babies and the provision of better perinatal care. Those are the
ways ahead, not killing handicapped babies or aborting the unborn!’5
If the right to end life without the consent of the subject were legally allowed, it wouldn’t
stop with disabled infants. The demented grandparent would be next on the hit list, then the
mentally subnormal, and so on. There are echoes here of the Holocaust. Life is a strange
thing and only one thing is sure – nothing ever turns out as we expect it will. Good comes
from the strangest and most unlikely places or the most unpromising beginnings. It is not
possible to predict with any certainty the quality of life for any one individual. There can be
too many variables, too many unforeseen events. All our planning can be changed
irrevocably by a moment’s chance happening. Equally, when things seem blackest, solutions
come from unexpected quarters. It is this unpredictability of life that makes living such fun,
such a kaleidoscope of experience, a tapestry of interwoven events, each one, good and bad,
depending on another for a coherent pattern. And it is not we who are the weaver, but God.
An editorial appeared in the British Medical Journal when Susan was just five months old. It
was depressingly negative in its description of the problems of spina bifida.
‘The prospects facing the surviving sufferer and his parents are daunting enough in
childhood. When the time comes to leave school the abrupt withdrawal of many special
provisions adds an unexpected burden and shows up many unrecognised handicaps.
Many of the children live in extreme social isolation. Emphasis on special schools has
deprived them of contact with physically able peers. Not only do they lack friends in the
outside world, but they also grow up with different standards. Deprived of the normal
teenage mythology about sex, they reach adulthood not only ignorant but believing an
entirely different group of sexual fantasies. More seriously, they emerge totally
unprepared for society’s almost universal demand for absolute urinary and faecal
continence…Life in a hospital school has not given them any idea of the volume of clean
linen and of disposal and laundry facilities which back up the ability of their nurses to
change a wet bed.6
But what it omitted to take into account was the love that is poured out on these children by
family and carers and how much love is received in return.
Lord, these reports were damaging and depressing, and there was an element of self-
fulfilment about them. If we had believed these ideas then they might have become a reality
in our own life. But happily we did not because we knew that the most important factor in
this unhappy scenario had been excluded – Your presence, which can transform the most
unhappy circumstances into joy.
We were not particularly upset though, by this editorial, because at that time we were quite
unable to imagine Susan as a teenager as her life expectancy was apparently so poor. It was
clearly written to promote wider acceptance to the increasingly popular way of managing
severe spina bifida – death by ‘benign neglect’.

15
But doctors are not in the position to play God. They can only see the immediate clinical
picture and place it in the spectrum of similar clinical conditions. They do not have the
insight or wisdom to add in the other factors that need to make the picture complete. The
devotion and skills of parents, the amount of support and love in the extended family are all
just as important.
I was made aware of this about two years after Susan’s birth. I was asked by a social worker
to visit a young mother in a poorer area of the city, who had just brought her very sick baby
daughter from hospital. She was suffering from spina bifida and hydrocephalus, made worse
by anaemia, infection of the lesion on her back and severe malnutrition. At her birth, her
consultant had decided with his team that this child was severely disabled. The decision not
to feed her was made, both because of the clinical condition, but also because the mother was
a seventeen year old single girl in poor economic circumstances. It was felt that she would
just not cope, especially with the dressings on the baby’s back.
Hospital staff didn’t know, (because they had not asked), that her work in a local nursing
home involved changing the dressings on the varicose ulcers of her patients. She’d had plenty
of experience at caring for wounds! The baby’s grandmother visited daily and soon began to
ask the nurses questions about the ‘brown medicine’ that the baby was being given (a
sedative), and why the baby was not feeding. It soon dawned on the family what was
happening and they took the baby home. The complications of anaemia and malnutrition had
been caused by her doctors.
Nine years later this baby’s grandparents moved into my practice area and they brought her to
visit me. She was staying with them for a week. Her mum and dad had got married soon after
she was brought back from hospital and were now running a successful business. Their
‘handicapped’ daughter was attending school full time and loved reading. Her main hobby
was horse riding. She was a pretty little girl with a gorgeous smile and was adept at the use of
her wheelchair, although in the garden she spent much of the time sitting and playing on the
grass or in a tent with the other children.
While I was recovering in hospital, I found some documents on my bed one day. I have no
idea who put them there, but they were an analysis of the outcome of six spina bifida births
that had occurred in the hospital in recent months. Only one baby seemed to have survived
and all had been severe cases. It is indicative of the passive role that we as patients used to
take a generation ago that I was too frightened to ask where the papers had come from. I
thought that the consultant might have dropped them by mistake on my bed! But there was no
way that I would ask questions or seem to be ‘difficult’. I am constantly amazed these days at
the courage and confidence of patients not only to speak out but also to complain.
It was only very much later after I had come home that I realised that someone had left the
papers there deliberately, trying to give me information or alert me. Perhaps it had been the
registrar feeling he told us too much, that perhaps their plan of benign neglect had been a
better one than ours, to take her home to ‘wait and see.’ It was assumed by the team caring
for us that the burden of bringing up a child like ours would be detrimental to our lives and
that of our son, and that our child’s life would also be a burden to her. But it seemed that all
the potential gifts she had been born with, and that she would be able to enjoy and to share–
making music, painting, looking at stars, hearing birdsong, the gift of life itself – would all be
taken from her if she stayed where she was.

16
We decided we had no choice. We couldn’t agree with the policy the hospital was following
and felt that we would try and make her life, however short, as comfortable and loving as
possible. Armed with plenty of dressings to keep her back clean, we collected our daughter,
packed our bags and went home to introduce her to Paul, her two and a half year old brother
who was most excited at having a baby sister at last!
Lord, I now realise on looking back that you were there right from the beginning, ensuring
that Susan survived potentially hazardous situations:
• No amniocentesis, which would surely have revealed her disability;
• No further tests during pregnancy until nearly at term;
• Enough strength for both of us to overcome the effects of a traumatic birth;
• The wise and timely words of a young paediatric registrar;
• The random reading of a newspaper.
All these interventions ensured that Susan lived, and your will prevailed.
Coming Home
‘Before I made you in your mother’s womb I chose you. Before you were born I set you
apart for a special work’. Jeremiah (1:4)
Although spoken to Jeremiah, is it too farfetched to suppose that God is speaking to each of
us, that each one of us has a unique task in life, planned for us, even if outwardly our skills,
our potential, might seem quite inadequate in the eyes of the world? Another ‘nudge’, about
considering writing this account, came on the same day that I had heard the Bible reading
from Jeremiah . It was in the form of a hymn ‘Take my life and let it be, consecrated Lord to
Thee’. The second verse could have been so difficult to sing, containing as it does, the words
‘Take my feet, and let them be, swift and beautiful for Thee,’ - a hopeless image for a
paraplegic. But the same verse says, ‘Take my hands and let them move at the impulse of
Thy love’.
This was the positive, dominant thought we had as we stood by the cot and watched Susan in
those first few days. This hymn reminded me so strongly of how I felt all those years before
in the baby unit.
The house was full of flowers and people came to visit us. The first was my great friend and
general helper, Vera, who cleaned, minded Paul, and was always there with a welcome if I
arrived home first before my husband. She came in and burst into tears. She was the first
person to call Susan ‘your daughter,’ a word that sounded so wonderful to me. Two elderly
ladies came from the church, but few close friends came. Indeed, one mother of a child the

17
same age of Paul phoned to say she would not be visiting as she didn’t want her child to
come into contact with death at such a young age – she made it sound like measles!
We had letters too. One, from a dear friend, and older colleague of my husband, Moira
Symons, wrote with such love and encouragement:
‘I just wanted to write a note to you to say I hold you in my prayers often and often
every day… I don’t think I would have the courage not to be a Christian when I care
about people like you and Paul and especially Susan, so deeply. To believe in prayer is
to be released from helplessness. And for you I know that brings strength and the
courage you both have…’
At this point Susan looked far from dying. She was sleeping well and was a happy baby,
crying only when hungry. Dirty nappies didn’t bother her of course, as she had no sensation
below the level of her spine. She was feeding greedily, perhaps, I thought, making up for
what she had not received in the hospital. But now she was taking a bottle with great
enthusiasm and putting on weight very well.
Many friends from our professional lives didn’t contact us, or if they did, sent cards of
sympathy as if Susan had already died. I really think they were unable to face us, or our baby.
A few weeks after her birth we went to a garden party and music-making afternoon at a
country house owned by a consultant friend. Children were invited so we took ours. Paul
joined in with other children and I left Susan in her pram, asleep close by. I felt it quite
noticeable (and hurtful) that she was completely shunned. No-one went near her, or looked in
her pram, as one would do quite naturally with a new baby. What were they afraid of? She
looked beautiful, her pretty little face peacefully asleep.
However, our neighbours and dear friends, Penny and David Franks, were most supportive
and helpful from the very beginning. Penny was a nurse and understood only too well the
difficulties that we were facing. She and David shared our views, thankfully, convinced that
Susan’s life did have meaning even if it was going to be a short one. Later, when their own
daughter Georgina was baptised at Hall Green church, we decided to share the occasion.
Susan had a special blessing (having already had one christening just after she was born) and
we all had a wonderful christening party. Penny agreed to be a godmother to Susan. Her other
godparents were Alan and Barbara Mence, my medical partner and his wife, who were also
very good friends to us.
All our relatives came to the christening. Although they lived in other parts of the country
they had all been to see us soon after Susan’s birth, to share in our sorrow but to offer hope
and encouragement. I am only from a small family, but my brother Michael and his wife
Audrey, although living over a hundred miles from us, had remained in touch and their sound
common sense was a great help. My husband’s family is larger, and also spread out all over
the country, but even so, they all managed to come to Birmingham again, this time to share
our happiness at her church blessing more than a year later – a year that we felt was a bonus,
one that we had nearly not enjoyed or experienced with her.
It was hard to talk to medical colleagues at the hospital. Some, who had been involved in
looking after me in my pregnancy I believe were embarrassed, as if somehow they were to
blame for her condition. Why must people always look for someone to blame? It was ‘just
nature’, ‘one of those things’. Perhaps the viral infection I had suffered in early pregnancy
was to blame.

18
Lord, You created viruses too. Why? They are almost too small to be called Life and yet their
presence within us can exert the power of a laser and change our chemistry disastrously.
What was your purpose in planning this form of creation?
Why did you watch and do nothing when I came into contact with the person who already
had the viral illness –harmless to them but so dangerous to my baby?
It would be easier not to believe in your role in creation, then I wouldn’t feel I must blame
you for negligence. Better to call it a ‘coincidence of unfortunate events’, a natural disaster.
I need to find some answers and be able to trust you still.
I had begun to work in the medical practice in Hall Green, Birmingham four months before
Susan was born. Alan Mence, a friend and fellow orchestra member, had come up to me in
church one day and asked if I would like to consider joining him there as a part-time partner.
His current partner, John Smout, was leaving to go to a practice in another town. It seemed
unbelievable, an answer to prayer. We had bought our house just round the corner from
Alan’s practice about three years before in 1974, a time when I had begun to work in a
practice in King’s Heath, another part of Birmingham. We had our first child, Paul who was
born early in January 1976. When he was a year old I found that I couldn’t cope with the
demands of a full time busy practice and a small child, even though my husband always
shared in all the domestic tasks and care of Paul.
When he was only nine months old, Paul had been rushed into hospital in the night suffering
from a bad attack of croup. Like all working mothers I was faced with the awful decision
whether to go to work the next day or stay with my child. I decided his condition was so poor
that I would remain in the hospital. It was as well that I did, as the doctors spent part of the
day trying to decide whether he needed a tracheostomy (breathing tube in his neck) to aid his
breathing. But my partner at the practice was furious and told me to ‘sort out the priorities’. I
gave my letter of resignation within days. For a while I took a part-time post as a clinical
assistant at a geriatric hospital. Paul and I would visit every day for about two hours, doing a
ward round and writing up medication for about thirty elderly long-stay patients. Paul, at a
year old and only just learning to walk, loved it and so did the elderly people. His unsteady
steps and wicked laugh brought such joy into the rather gloomy ward, and his fascination
with walking-sticks and zimmer frames brought many a smile to this love-deprived group of
people.
But from a medical point of view it was stifling and unchallenging work and I loved general
practice and felt this was where I was meant to be. We often walked along Fox Hollies Road
and I would look at the medical building with longing, but was sure that the incumbent
partnership was permanent. So when I was offered the part-time post there I could have cried
with happiness. But…I was pregnant. Alan and his wife Barbara were wonderful. Barbara
agreed to continue to look after Paul for me on the mornings or afternoons that I was
working. She had been doing this for some time, when I was working at the other practice.
She also agreed to look after the new baby for me too, which was a great relief. I knew that
they would both be well cared for, and be very near me. Alan and Barbara lived ‘over the
shop’. Part of their house had been converted into the practice, so as well as hearing Paul
shouting or playing from time to time we could all smell Alan’s lunch being cooked! As for

19
being pregnant Alan saw no problem there and smilingly told me the patients would love it.
How right he was!
I took six weeks maternity leave following Susan’s birth, having gone to the hospital to be
induced straight after a morning surgery. Back at work, over and over again friendly faces
asked ‘what did you have?’ and I had to say over and over again ‘a little girl, but she has
spina bifida’. This in itself was cathartic, to have to admit the awful fact frequently. But it
helped to reduce the great amount of pain and sorrow that lay just short of tears. My patients
were wonderful. These were real ‘Brummies’, many of whom had lived through the bombing
of Birmingham in the war, younger ones still reeling from the terrible IRA pub bombings of
1974. After that, what was one disabled youngster? Their sensible encouragement kept me
sane. Practical advice, knitted jackets and stuffed toys all started to flow in to the surgery and
professionally I got no complaints about my work! A common opening phrase from a patient
would be ‘I’m sorry to bother you with this, it’s so trivial compared to what you are going
through…’ Their sensitivity was extraordinary and a bond was formed with these kind and
loving people that was broken, oh, so reluctantly, when I retired in 1998 from the practice.
We gradually got into a routine looking after Susan who seemed to be thriving. The large
hole in her back was gradually filling in with granulation tissue, and started to form a skin
over it. Within a few months it would be completely covered with a thin membrane-like skin
reducing considerably the risk of meningitis. But we still felt very alone with our problem
and received no help from social services. When my husband approached the Director at a
City Council meeting that he was attending, he received an evasive reply, followed by a letter
explaining that due to lack of funding it was not possible for every family to receive
information or help from a social worker. They had not even been notified by the hospital of
Susan’s birth! This was also the case with the local health clinic. No one had told the health
visitor that I was out of hospital, or even about Susan’s disability. On reflection, I think it was
a disadvantage to be medically trained and working locally. Everyone either assumed I had
no need of help or could access the services myself. They didn’t realise that having a medical
degree didn’t help in these circumstances. It was just as hard being left alone with no help
and no energy to seek help as it would have been for anyone else.
One friend though had an idea and suggested that there might be a self-help organisation
locally. So I looked in the phone book and found ASBAH (Association for Spina Bifida and
Hydrocephalus). I telephoned the number and made contact with Lettie Bellshaw, who was
the local social worker for the Association. She and her husband Bill, who was also a social
worker, became our close friends almost immediately. Lettie came to see Susan and was so
supportive right from the beginning. However, her knowledge was considerable and the news
was bleak.
Our area was not good statistically for the long-term care of spina bifida patients. The
specialist neurosurgeons were largely against inserting any shunts and there were several
children in the area slowly succumbing to the horrendous effects of hydrocephalus. One
indeed had already gone blind. Lettie and others were trying to use their influence and that of
the association to stop this practice of non-action but were having little influence on the
clinical decisions being made.
Medical Help

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‘Honour physicians for their services, for the Lord created them; for their gift of
healing comes from the Most High…they too pray to the Lord that he will grant them
success in diagnosis and healing, for the sake of preserving life’.
(Ecclesiasticus 38: 1-2; 14)
We were expecting to receive an appointment with a paediatric neurosurgeon to review the
state of Susan’s hydrocephalus. There was no doubt her head was beginning to grow. It was
not yet outside the range of normal but for her size was beginning to look unusually big.
After a while we phoned the hospital. A mistake had been made and there was no
appointment booked. One was given us for a few weeks time. Meanwhile, Alan, my partner
at the surgery, had spoken to a mutual friend who happened to be a well-known neurosurgeon
who played in the same orchestra with us. In his opinion, no shunt should be inserted, and the
baby should ‘be allowed to die’. But I had seen these children in the hospital with their
blindness, their pressure sores, their enormous heads…and they hadn’t died. Had we been
right to bring her out of hospital? Had the hospital doctors been right after all? Would it have
been better that she died in hospital and not slowly and painfully outside it? And how could
we allow that deterioration to happen to our bright-eyed, chirpy little baby? Terrible doubts
began to plague me. But she was alive and now we had more decisions to make.
To try and work off the misery that was beginning to beset me I threw myself into work, into
music and into writing. We phoned the hospital again and an appointment was found with the
consultant for the next morning. With enormous relief, that evening we got both the children
to bed and settled down. We even got out a bottle of whisky to have a drink – something we
rarely did. About nine o’clock there was a knock on the door. We hurriedly pushed the drinks
and bottle under the settee, and opened the door. Standing there was one of Birmingham’s
most eminent paediatric general surgeons, Mr. Sean Corkery. I had once been a student in his
team. Recoiling in amazement we invited him in and offered him a drink. His choice was
whisky, which we sheepishly had to retrieve from under the chair! His opening words still
remain with me: ‘I hear you have a problem.’
With that, he asked to examine Susan. We took him up to her bedroom. I tried to convince
him that she had some movement in her legs but he confirmed that any movements were due
to reflexes and not from true movement involving the brain. We told him our fears about
hydrocephalus and without hesitation he told us he would operate on Susan and insert a shunt
within the next few days. He will never know the extent of the relief that we felt when he said
that!
Lord, that was the worst time – when doubts grew and I could not find you. What did you
want us to do? I believed you had intervened to save Susan. You were caring for her as she
was developing some small skills and learning to smile. Our love for her was absolute and
we couldn’t bear to consider losing her, or watch an inevitable decline into an even worse
level of disability. Thank you for sending someone to help us.
I recently received an encouraging letter from my friend, the social worker, Bill Bellshaw,
which reminded me about the number of doctors to whom we shall always owe enormous
gratitude, despite the events of the first few weeks. In it he said:

21
‘… Recently I was giving a Bible talk about ‘thankfulness and gratitude’ to the
women’s fellowship at our church and gave the illustration of your thankfulness to the
doctors and surgeons in Birmingham at the beginning of Susan’s life and that you had
written to the surgeons in gratitude 25 years later when Susan had graduated. There
were thirty women present – we took Susan’s photograph to the group and she was
much admired! We thought about how seemingly insurmountable problems can be
overcome by the human spirit, both in relation to disability and to great achievements.
On that day Susan was our inspiration. In addition to thinking about key women in the
Bible – Hannah, Mary, Ruth, Esther to name but a few, we included Susan for her
lovely spirit and determination…’
When I first read it I was slightly bewildered. Had I really felt gratitude to the ‘doctors and
surgeons’ that my friend referred to? Certainly I bore my obstetrician no malice and
understood his reasons for his actions and decisions. I was less sure about the consultant
paediatrician who had made the decision to allow Susan to die, and who had then told us that
she had made an appointment regarding Susan’s hydrocephalus, when apparently she had not
done so.
Lord, I hadn’t recognised until now that I had felt anger towards that paediatrician. This
has been suppressed all these years. Forgive me for this. Thank you that we found out in
time that we needed to take action ourselves to make that appointment, that it was not left
until it was too late.
But of course, we were totally indebted to Sean Corkery for his timely intervention, and also
to Mr. Tony Hockley, the consultant neurosurgeon who took over the management of Susan’s
shunt after Mr. Corkery had inserted it. The indomitable Mr. Henry Piggott, (the orthopaedic
consultant who everybody feared, but whom we loved), also gave us great hope and
encouragement, as did his colleague at Oswestry, Mr. Rose, who even managed to get Susan
up and walking for a spell in an ingenious contraption. These were the people I did indeed
write to last year. I wanted to share my enormous gratitude and thanks with them and to tell
them the good news of Susan’s achievement when she got her degree in forensic science. The
letter from Bill was a wonderful confirmation that Susan’s story needs to be told as an
encouragement to others.
Lord, just as I have spent so much time trying to find a way forward in this, and indeed,
whether I ought to continue to write, you send a sign as an answer to my questions and
doubts - a letter from a friend. Thank you!
Over the next eighteen months Susan was to have three shunt revisions, each involving a
hospital stay of about four days. She had no other medical treatment because officially she
was in the ‘no treatment’ category. That had been breached by Mr.Corkery’s compassion but
I still felt that the general opinion was that she would die soon from her condition. We felt
this so strongly that in October 1978 we celebrated her six month’s birthday in case she
didn’t reach one year. But she got through her first year and then her second. Unofficially I
was feeding her antibiotics as soon as I had evidence of a urine infection. Its hard being a
doctor and a mother!
As well as having regular hospital follow-up appointments with Sean Corkery, we were
referred to Dr. Jean Clark in the Community Health Department. This formidable lady, who
terrified me, was an enormous tower of strength to us. There had never been any doubt in her

22
mind that Susan was going to ‘make it’. She was meticulous in her physical examination of
her patient and was the co-ordinator of the various people we had to see, and clinics we had
to attend. She arranged for Susan to receive physiotherapy weekly at the local health clinic.
She made sure that appointments were always made with the spina bifida clinic and later, the
renal clinic.
But the greatest moment came when she suggested that Susan might enjoy nursery school and
arranged for her to attend Bray’s Road School in Yardley, Birmingham from the age of two.
This was to be such a fruitful time for Susan. Although her father had made her so many aids
(like the prototype skateboard, long before they were invented, that she propelled herself
around on), at school she had space, friends and wonderful teachers. She was taken and
brought home by school transport, and soon began bringing back the scribbled pictures she
had done. One day when she was three years old, the whole school put on a play in which
Susan was a tree waving her arms around in the wind. The accompanying music for this was
Grieg’s ‘Morning’, and we always think of that time when we hear that piece.
Lord, thank you for the gifts you give us. Thank you for musical instruments and people who
play them. Thank you for paints and brushes and white paper to cover with colour. Thank
you for our voices, which can sing, or talk sympathetically to other people, or talk to you.
Thank you for the opportunities that you give us to serve you every day.
Communications
‘You are the light of the world. A city that is set on a hill cannot be hidden’.
( Matthew 5:14)
Lord, I hope that this account will be a light – one that illuminates the whole area of
suffering and reveals, out of the greatest darkness of despair, the truth about your love and
great compassion for us. Writing this is rekindling memories; my memories of all the
moments when instead of despair and fear I was overwhelmed by hope and a knowledge of
your love for us. It was this rediscovery of Your grace and close presence at a time of great
bereavement – the mourning for normality, and the loss of freedom from worry and mental
pain – that gave me courage to continue and to find out more about spina bifida and other
severe physical disabilities and the management of these conditions. Telling this account is
not easy. But your faithfulness to us needs to be told, to lighten the dark places in other
people’s lives and illuminate the corners where hope is hiding.
I found that reading, attending conferences and talking about disability helped me a great deal
to come to some understanding of the practical aspects of the problem. In 1980, Francis A.
Schaeffer, and Dr. C. Everett Koop who was the American Surgeon General came to hold a
conference in Birmingham. Whilst denouncing abortion, it also covered the controversial
debate on the non-treatment of disabled babies. Over a thousand people attended. Also on the
platform for questions and debate were Edith Schaeffer, the author, and Professor Zachary,
from Liverpool. I went forward to the microphone to tell them about Susan’s extraordinary
experience and to ask a question. The whole conference was taped, so the questions from the

23
floor were recorded, which is how I have been able to check my words. After telling the team
on the platform and the audience about Susan’s medical history and present condition, I said:
‘We see these as problems that I hope we’ll be able to help her to overcome. My
problem is that she is still in the ‘no active treatment’ group. At the beginning we were
told that she wouldn’t be given antibiotics if she developed any illness and that she’d
‘hopefully’ die as this would be kinder to her. Now, as a doctor, I can’t go along with
this. For instance, I am giving her antibiotics twice a day to try and prevent her getting
any kidney infections. Naturally if she gets a sore throat I give her something else to
help that too. I suspect though that I am doing this against the wishes of her medical
advisors. I feel in somewhat of a dilemma about it and I want to know - when does the
‘no treatment group’ become a ‘treatment group?’7
The support I received from the audience and from those on the platform was tremendous! It
was so encouraging to know that some people in the world at least felt that our daughter had a
right to live.
After that, there was less talk of death and more planning for her future. I needed more
encouragement from my church and my faith at about this time. I turned to other people’s
experiences, and began to read widely. One day while I was in a local Christian bookshop I
stopped to talk to one of the assistants and told him of my specific interest in physical
handicap. There seemed very little positive literature on the subject that might be helpful in
getting me out of the depths of misery that I was beginning to experience again. And then he
directed me to Joni Eareckson’s work and I was immediately helped and uplifted by this
remarkable testimony of faith. I think that the part of the book that stayed with me was when
Joni, who had been seriously injured in a diving accident leaving her quadraplegic, doubly
incontinent and quite helpless, decided to call on the elders of the church to take part in a
healing service, exactly as described in the Bible:
“Is any one of you sick? He should call the elders of the church to pray over him and
anoint him with oil in the name of the Lord. And the prayer offered in faith will make
the sick person well; the Lord will raise him up”. (The New Testament, James chapter
5 verse 14 The New International Version).
She was sure that God would make her walk again just as Jesus had performed miracles for
the paralysed. But she had to come to terms with fact that God didn’t always work in this
way, and her physical condition remained unchanged. Her friend Steve challenged her
despair and disappointment:
‘Remember the Greek word, dunamos? From it comes dynamite and dynamo. One is
explosive energy. The other is controlled, useful energy. They both mean great power. A
physical healing experience would be like an explosive release of God’s energy getting
you out of the chair. But staying in the chair takes power too – controlled energy
flowing through you that makes it possible for you to cope…Our lives are like paintings
which God is making. Often we jump off the easel, grab a brush, and want to do things
ourselves. But when we do this, we only get a bad copy of the masterpiece He intended
for our lives. Joni, your body, in the chair, is only the frame for God’s portrait of you.
You know, people don’t go to an art gallery to admire frames. Their focus is on the
quality and character of the painting’.
She continued:

24
‘This made sense. I could relax and not worry so much about my appearance. God was
painting me in just the perfect way so I could enhance the character of Christ within.
This gave a whole new perspective to the chair. Once it had been a terrible burden, a
trial to me. Now I could see it as a blessing. For the first time in my paralysed life it was
indeed possible for the wheelchair to be an instrument of joy in my life’.8
Steve’s analysis of the kinds of power or energy which led to the decision that from now on
Joni would do her ministry from the chair with help from others, seemed to me to be the most
extraordinary act of faith. As he said later – to get out of the chair would have been a nine-
day’s wonder and after the headlines had been forgotten Joni would have been ‘just another
minister’. But in this way, her faith would be increased by God’s power and her story would
reach many more people. After hearing Steve’s eloquent interpretation of God’s will for her,
Joni no longer saw herself as a chair-shaped failure, but a soul being honed by God for his
service. The chair became an irrelevance instead of a barrier, and her terrible disability
merely an inconvenience. She went on to become an internationally known evangelist and
artist. It seems that God always answers prayer, but the reply is not always what we expect!
(6.1.2015 : my goodness isn't this true!)
What is a disability anyway? I have known profoundly physically ‘disabled’ people who are
quite whole and healthy, but function in a different way to the majority of people. I
particularly like the writer Helene Cixous’s attitude to her nearsightedness:
‘I am someone who looks at things from very, very close up. Even if I have often blamed
God for this, I often thank him for it. Seen through my eyes, little things are very big.
Details are my kingdoms…I am someone who sees the smallest letters of the earth. Flat
on my stomach in the garden I see the ants, I see each of the ants’ feet…’9
(Susan has always had perfect vision )
One of the joys I have been given since Susan’s birth is the ability to live for the present. I
was describing this to a Prioress whom I know, and she introduced me to the concept of the
‘sacrament of the present moment’. Here I read about mental as well as physical handicap
and it was another source of help as I read and prayed for more enlightenment on the cause of
handicap and its relation to God’s will:
‘These simple souls find themselves discarded in some forgotten corner, like pieces of
broken crockery, for which no further use can be found. Here, neglected by men, but in
possession of God through their pure, steadfast and passionate, though deeply tranquil
love, they make no effort of their own. They know only that they must allow themselves
to be carried along in God’s hands, to serve Him in His own way. Often they will not
know for what purpose, but God knows it well. The world will think them useless.
Indeed, appearances favour this judgment, though the truth is that secretly, and
through unknown channels these souls pour out infinite blessings on people who may
never have heard of them, of whose existence they are themselves unaware’. 10
This offers an alternative, intrinsic reason for the presence of disability in our world, one that
is more persuasive than the popular belief that ‘society needs handicap’ for some kind of
sanctification bestowed on those who care. Altruism has its place but I am sure God does not
permit handicap in order to make others feel good! It was the answer I was searching for, in
finding a meaning to the reason God allows imperfection. The idea that the weak could ‘pour

25
out infinite blessings’ just by existing was an attractive one. But was it fanciful? Did the
author intend this concept? And then I found the following, which seemed to repeat the idea:
‘If a spiritual life is a necessity for every man, it is especially necessary for the weak
and for those who cannot find human fulfillment. Even more than others they have the
right to receive the truths of faith and especially a knowledge of Jesus Christ by, and in,
love, fraternity, prayer and silence. Their religious life will not primarily be one of
action but rather that of contemplation – that is, the life of one who welcomes Love on
earth, who receives peace and radiates it and who lives a life nourished by prayer’. 11
Once again we find the concept of a soul radiating peace or blessings, simply by existing in
God without any reference to the intellect.
The late Alison Davis, who had spina bifida herself, reached a similar conclusion:
‘The most severely handicapped people of all may seem to contribute little except their
presence, but this is in itself valuable and deserves respect and understanding. We have
no right to segregate those who we think need to receive more charity (love) than they
seem able to give. Because what they do have to give can be profound, spectacular and
essential to the development of a just, good and truly charitable society’.12
I wanted to challenge current orthodoxy in the medical world: that to be dead was better than
to be disabled. In an article for a medical publication, I told the story of Susan’s birth and her
subsequent improvement, but left out the details of how she nearly died. 13
I still felt unable to
write about that and it was too soon to make such a thing public, because around that time, a
paediatrician was about to stand trial for infanticide. He had decided that a baby with Down’s
syndrome under his care had such a poor prognosis that he would be better dead. The doctor
gave the baby large doses of a painkiller and the child died. My article was actually held back
until after the trial as, even though the infanticide case was not mentioned in my article, and
neither was Susan’s near death experience discussed, the editor felt that any discussion of
neonatal handicap could perhaps jeopardise the trial and matters were still sub- judice.
The main point of my article was to question the policy of what I was beginning to call “give-
up-itis.” Before the birth of Susan, my own feelings towards most disabilities were, generally,
fear, pity, and a strange anger that Nature (or God) could be so cruel to the victims and their
families. Conditioned by the traditional hospital training, where diagnosis, treatment and cure
were the usual intended sequence of events, I found some areas of general practice
frustrating. So much of the work involved the care of the chronic sick. Many patients were
tired of living, and the complexities of sorting out multiple pathology in the disabled and the
aged seemed insurmountable, especially when you were faced in the end with the patient’s
other problems of loneliness, sense of worthlessness, and poverty – material and spiritual. I
suffered, as I believe many doctors do, from an attack of “give-up-it is”, a feeling that any
medical action I took in a chronic case hardly made any alteration to the patient’s life and
indeed could worsen it. But after a while, compensated by the more rewarding cases in
general practice, I began to realise there was a lot more to medicine – and life – than
diagnosis, treatment and cure. One of the rewards of general practice is the gradual awareness
of extended family relationships. I remember one grand old chap of 92 who troubled me so
much because I felt so sorry for him. Crippled with arthritis, blind, often confused, living
alone with the help of social services, his outlook seemed awful. When one day he developed
signs of a chest infection (which used to be called ‘the old man’s friend’), I felt tempted to

26
withhold antibiotics with his, and one family member’s consent, and treat him at home with
the help of our excellent district nurses, using only analgesics and good nursing care and just
‘wait and see’.
That night in surgery, a young pregnant woman seemed upset, and when I talked to her she
broke down and told me how sorry she was that her great-grandfather was so ill; he had so
been looking forward to the birth of his first great-great grandchild! I had no idea that this girl
was related to the old man, and it suddenly seemed very important that I should change my
management of his case. With his consent and my explanation of why the treatment plan had
changed we started antibiotics and, after a few rough days, he pulled through, to be rewarded
later by the birth of his first great-great-grand-daughter whom he adored. He died in his sleep
six months later. After that, my ‘give-up-itis’ went into remission.
I think that too many hospital doctors are infected with this complaint. Perhaps from their
experience they feel that the handicapped babies in their care are destined for a far from
perfect life and would be better if helped out of this world. But why stop at handicap? If one
interpreted the guidelines strictly, all children who might grow up to be unemployed, poor,
friendless or smelly (the negative aspects of a handicapped existence recited by one
consultant) would be at risk! Racial, sexual, or class eugenics are no longer with us
thankfully, but the political expediency of ‘scrap and replace’ when dealing with handicap
and abortion is now well and truly here.
In April 1981, BRMB, a local radio station in Birmingham, took the initial step of doing a
massive fundraising project and decided on ASBAH to be the recipient. The ‘Susan and
Friends Appeal’ was unexpected and quite a challenge. Susan was settling into her nursery
and we had no desire to turn her into celebrity. But the Spina Bifida Association had been so
good to us, that when one of their officers approached us and asked if Susan could be on one
of the posters that they were using for a fund-raising event, we rather grudgingly agreed as
long as that was all that it entailed. Several local celebrities backed this, including Ed Doolan,
who ran a daily show and wrote regularly for the Evening Mail. The method for raising
money was traditional, involving an envelope scheme. The organisation was incredible.
Every street in the West Midlands was targeted, and one person from each street, road,
avenue, crescent or boulevard was responsible for keeping the envelopes for that one area and
delivering them. Each area volunteer had phoned in to offer their help, and so their name and
their street was announced each day on the radio. Each day the tension mounted as the streets
were read out, district by district, the slower ones being chivvied, the enthusiastic ones being
applauded. Each collector was named on air and many were interviewed so nearly all streets
eventually were represented and named. Every day for several weeks the event was discussed
on air, or in the paper, and personalities involved in it were interviewed.
But the real attraction was that the envelopes were to be returned, not to the collectors, but
put in large containers in the city centre on one particular morning. On April 11th
1981, a
large platform was erected in Chamberlain Square in the centre of Birmingham, and many
celebrities came to wish the Appeal good luck. Some of these included the cast of
Crossroads, the Warwickshire cricket team, the Aston Villa team, and many others.
Soft toys, handmade portraits of Susan taken from the advertising posters, letters of support,
all started to be delivered in the surgery, mostly I imagine from the patients, but some from
people we didn’t know – lovely people from Birmingham. We had tried to keep it low key for

27
Susan, but the organisers pleaded that she should be there too, and so she was. She was on the
stage for only a few minutes. The huge crowd cheered and waved and she gave a tiny wave
back but was nearly in tears. She had a headache and had just been sick – not from
excitement but from a shunt complication that had only started that morning. But she
recovered quite quickly and we were ready to move on to some other exciting things in our
life.
I was phoned by the BBC out of the blue one day in 1982, and asked if I would appear on
Newsnight on BBC 2 that evening. The debate was to be between me and another doctor who
advocated positive action in hastening death in the abnormal neonate. My first reaction was
to recoil in horror from such a prospect. I have never enjoyed the limelight and felt I was
unprepared and psychologically unsuited to this task thrust upon me. But I was given
encouragement and strength and agreed to be there. The secretary on the line told me that
‘nothing was certain’ yet and they would confirm the time later in the day. As the day rolled
on, I became progressively uncertain about what I was about to do. There was no doubt in my
mind about the certainty of the moral arguments I was planning to use, and I knew deep in
my heart that this is what God wanted me to do, to speak out on behalf of all those who were
too young and frail to speak for themselves. But God has never answered my prayer for relief
from symptoms of anxiety! As I have become older He has taught me to recognise them for
what they are and try to live through any experience that is provoking this autonomic
response, but he has never given me an anodyne to remove the fear. So on this occasion, like
many others, I put up with the dry mouth, palpitations and frequent trips to the loo and waited
for the phone call confirming that the programme was to go on.
We had planned that evening to go into Birmingham to hear Shirley Williams M.P. speak at
a political dinner. My husband was personally invited and had to attend, and as I too had had
an invitation, and nothing more had been heard from the BBC, we decided we had both better
go to the dinner as planned. At 9.45 p.m. a message was passed to me asking me to get a taxi
‘immediately’ and get to Pebble Mill studios, ASAP! By this time Shirley Williams was in
the middle of her talk and it was with great embarrassment that I left the top table, grabbed
my coat and set out to find a taxi. The show was to go out at 10.20 p.m. I got to the studios,
was asked to run to the other end of the building, and fell into a seat as someone fixed a
microphone to my head. The camera was running and introductions were being made. I
couldn’t even say ‘good evening’ as I was so out of breath, but smiled weakly. Luckily, the
programme then dealt with another issue for about 15 minutes before returning to our debate
by which time I had recovered a certain amount of composure! I felt so sorry for the producer
having to work to such close deadlines.
I later wrote to Dame Shirley Williams apologising for having to leave her in the middle
of the speech. Her reply was typically gracious:
‘…I did actually recently speak in a debate in the House of Commons on the issue of
handicapped children being deprived of life and I very much share your view which
must be confirmed by having such a charming and attractive daughter. Please do not
worry about the ‘disturbance’. I didn’t even notice it and was very glad to be able to
attend such an agreeable meeting as the one that we had in Birmingham…’14
The TV debate was a success and once I had started to speak my nerves left me and the
issues discussed became the only focus that I had. The other speaker took as his example the

28
case of a man with Down’s syndrome whose parents died when he was in his twenties, and
who then had no-one but the State to care for him. He claimed that this afflicted individual
would have been better off dead than to face this hardship. I was extremely incensed by this
argument, and probably showed it! Luckily, so were many members of the public who wrote
to the BBC in protest at his point of view. Some wrote to me too. In a handwritten note, one
said:
Dear Dr. Gray,
My husband and I have just watched ‘Newsnight’ on T.V. and feel moved to write a few
lines to you to say ‘thank you’ for the stand you are taking in defence of the lives of
handicapped babies. We both said ‘thank God for people like her’. We admired you so
much for the way you were so pleasant and unruffled (!) in putting forward your point
of view, and we agree wholeheartedly with what you have to say…’ 15
It confirmed my opinion one again that ‘ordinary’ British people were kind, full of
common sense and loved fair play. They could see the unfairness of the starvation policy.
Active euthanasia, that is, actively doing something to end a life, such as suffocation,
poisoning and other such things, was illegal. But passive euthanasia, like the withholding of
medicine or worse, of food, was somehow considered by some professionals or academics to
be morally acceptable. But to most people I suspect, the withholding of food, which would
automatically bring death in due course, was plainly wrong. The child had no choice and
death was inevitable. That was not natural. All life needs food and water, and this had been
our argument when we brought Susan home from hospital. Witholding synthetic modern
medicines was more acceptable – it was only in the last half a century that they had been
available anyway. But to ‘play God’ and interfere with the natural process of nourishment in
young babies was thought, and still is by most people, to be unacceptable.
‘Your will be done’ is said daily by all Christians. So we had put Susan’s life in His hands
by only providing the most natural of care – her “daily bread”- her food and water. She had
been placed in the ‘no treatment’ category, but we had interpreted ‘treatment’ as medical
intervention, not withholding feeding.
Thank you, for the many people who have touched our lives and supported us by their
prayers. Many of my patients, many of those who watched Newsnight, and all those who
supported the Susan and Friends Appeal I remember with such gratitude and love. These are
the people who loved, listened and cared. Many thanked you for Susan with me. Many prayed
for her in their churches. So many sent toys and money to the appeal out of small pay
packets.
In 1983 was asked to give a talk to the AGM of the Catholic Doctors of Great Britain. It
was five years to the day that Susan had been born in the hospital just across the road from
where the meeting was being held. The weighty subject was ‘Christ in the Handicapped’, and
I was terrified! No theologian, I was a general practitioner with a disabled daughter. I could
only talk about Susan’s birth and the events that were shaping our lives at home and how this
was underpinning my faith in a number of ways. I told them of a conversation Susan and I
had had a few nights previously:
Susan: Is Jesus everywhere? Is he in my teeth? Is he in my eyes? Etc.
Me: Yes, his spirit is everywhere. He once was a man but now He’s in heaven, which is all
about us, if only we could see it.

29
Susan: Is He in my hands?
Me: Yes, He wants your hands to work for Him now as He is a spirit - so your hands must
be His hands.
Susan (In a matter-of –fact voice): Well, He wouldn’t want my legs- they don’t work!
Me: He has plenty of other peoples’ legs to walk places for Him. It’s your hands He wants
to use – you can paint for Him, write for Him, play music for Him, heal people for Him…
and then I was suddenly overwhelmed by the same feelings I had had in that baby unit five
years ago. Her hands are beautiful, and they work perfectly.
Thank you for books and for authors – those people who can communicate ideas and
descriptions of things and who have such success in influencing us and giving us peace
through communication of knowledge that leads to understanding.
Thank you too for the poets and painters who keep our souls alive, our spirits uplifted and
whole and who keep hope alive in our hearts.
Moving On
‘And we know that in all things God works for the good of those who love him, who
have been called according to his purpose’ (Romans 8:28)
We had always thought we would like to have three children, but Susan’s birth made us
unsure of what we should do. Statistically, once a family has had one baby with spina bifida
the risk that subsequent pregnancies might also suffer a neural tube defect rises to 20%. We
felt that the odds were too great. If we were to try again for another baby, there was a strong
likelihood that he or she would be affected. We would certainly, after knowing Susan, be
quite unable to consider termination of an affected foetus, but equally the strain of looking
after two babies with complications we thought would overwhelm us. We decided that we
would adopt our third child. Because of the likelihood that Susan’s life would be short, we
felt we should ask for a baby boy about two years younger than Paul, who would grow up
with him.
We had to wait such a long time, going through many rigorous tests about our suitability as
a family to take on another baby. When it seemed that we were never to be contacted by
Social Services, later in 1981 we were eventually approached, and asked if we would
consider accepting a 10 week old mixed-race baby boy. This came as a great, but welcome,
shock. We were expecting a three year old toddler so had got rid of all our baby clothes, the
pram and all the paraphernalia apparently needed for the care of a young baby. Susan was in
hospital having an operation on her hips. I had actually said to a friend that I was sure that the
baby would come as soon as we had fixed Susan’s operation date! We had postponed it for a
time in anticipation of a possible child’s arrival.
We went to see our new son who was absolutely gorgeous! No doubt about it – he was ours
from the first minute we saw him. He was quite light in skin tone, and Susan and Paul who
had been prepared carefully to expect different racial features took one look at him and
wailed ‘but he’s not black!’

30
(I think we were one of the last white families in Birmingham to be offered a mixed-race
child. Political correctness later dictated a different policy, leaving many children
permanently in care and not adopted, for lack of “suitable” homes).
The first few weeks of caring for David had to be carefully orchestrated. Susan, in a waist-
to- toes plaster cast came out of hospital on a special trolley that we were unable to keep, so
we had to find a large pram that would allow her to lie full length so that she could go out.
We bought a conventional baby buggy for David, but each time we went out we needed two
adults to push the prams! Also, because David was an adopted baby, I did not qualify for any
maternity leave. (I believe the law has now been changed to alter that anomaly). At this time
we had a full-time baby-sitter/housekeeper, Mary Collett. She had been looking after other
people’s children in her own home for some years, as well as bringing up her own four
daughters, and we thoroughly trusted her. She only lived a few minutes away and was a
friend of the family. We found it easier to get someone to stay in the house with the children
rather than get them ready in the morning and take them elsewhere. This meant that if they
were ever sick or if school was closed they would be able to stay at home in their own
environment, and with their own toys and be cared for very well indeed. It also meant that I
sometimes found the ironing done and dinner ready when I got home! Mary was ready and
willing to help me care for the 10 week old baby. I was only working five half-days a week
so had a lot of time at home to bond with David. We couldn’t go out because of the transport
problem.
David arrived already suffering from a wheezy chest and was taking antibiotics for
bronchitis. That first night I was too afraid to go to bed, and stayed awake downstairs in the
warm room next to his pram where he was sleeping. He really was a beautiful baby, with an
olive skin and curly hair. He looked just like a little Italian cherub! He was also a ‘good’
baby, fed well, slept when appropriate and smiled engagingly at all who talked to him. By
coincidence, his pre-adoption check-up was done by Dr. Jean Clark, the same paediatrician
who was supervising Susan’s care. She had no idea that his new home was to be ours and she
seemed pleased at that news.
Although we had supposed that David would take his place as the younger brother in a family
eventually of only two children, this was not to be the case. Paul and he got on very well as
brothers, but the age difference meant that they had little in common except for their
schooling – all three children attended the same schools together from the age of four to
sixteen years. On the other hand, a great bond began to form between David and Susan.
David became fascinated by her wheelchair and was perceptive in his care of her. From an
early age we would hear him cry: ‘Sue can’t go up there. Look at all those steps!’ And Susan
in turn, whilst adoring her older brother, found this new little one a constant source of
amusement, one who allowed her to be ‘bossy’ but hardly ever complained! David was a real
gift to us.
As a mixed-race youth, he was often stopped and searched routinely by the police, even being
accused of breaking and entering into his own home. This gave us insight into the reason for
so much hostility towards the police by this group of young people. Much later, when as a
teenager he became entangled with the law and was charged for an offence he didn’t do, we
as a family found even more evidence of our solidarity and bonding. Through the months of

31
anxiety for him, our natural fear and dislike of any involvement with the police or the courts
grew, as did our terror that his story would not be accepted. But I was aware that somewhere,
somehow, as Julian of Norwich said:
“All shall be well, and all shall be well, and all manner of things shall be well”.
A witness came forward unexpectedly, confirming that David was not involved and so he
was acquitted. Then even more surprisingly, another lad owned up to the offence and pleaded
guilty. I was so moved by this young man’s honesty that I contacted him in prison and wrote
to him weekly, sending him books about cars that he loved. We kept in touch with him and
were delighted that the training that he received during his three year sentence at a young
offenders institute, enabled him to find work as an electrician, giving him self-confidence and
maturity.
Meanwhile, was it a coincidence that after this nightmare, the family seemed to gravitate
towards more involvement with the law? Paul, our eldest son, took a post-graduate degree in
law and became a lawyer, I left general practice to be a police surgeon, and Susan became
attracted to forensic studies. (David, understandably chose to keep away from all that and has
always worked in the building trade). This seemed to be such a positive outcome from such a
terribly worrying time – and I never expected that my prayer for peace and freedom from
worry would be answered in such a remarkable way!
‘You of little faith, why are you so afraid?’
(Matthew 8:26)
I have already mentioned how I have been unable to understand why my symptoms of stress
and anxiety mainly associated with occasions like waiting for Susan to come back from the
operating theatre, have never disappeared. David’s problems provoked a great deal of such
anxiety, but I found that by reading or thinking this text I could relax.
‘Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto
you. Let not your heart be troubled, neither let it be afraid’. (John 14: 27)
Lord, You know those times when I feel sick with worry; when a sense of foreboding darkens
all my thoughts and invalidates all good things around me; when life seems to have no
purpose or direction, and you seem so very far away, beyond the horizon, walking away..
Or when people near to me try to convince me that you are merely a figment of my
imagination or a wish-fulfillment of my own making. You know these nightmares, you know
the pain, you also have felt deserted and alone.
Do not judge me for my lack of faith in those dark times, but illuminate my darkness and my
fears.
When Susan was about four years old her neurosurgeon, who was now Mr Tony Hockley,
suggested that we should consult an educational psychologist, in order to assess her mental
ability. Mr Hockley wanted a base line so that he could monitor her ‘decline’ as he put it,
should she have any more shunt problems. Her vision was (and still is) perfect with no need
for spectacles. Her hearing was also good. Her memory seemed reasonable and she was doing
well at school but we took his advice and got tests done. The results were strange. Her verbal

Known by God: A story about a child born with diability as told by her mother Jennifer Gray

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Known by God: A story about a child born with diability as told by her mother Jennifer Gray