The document provides tips for nurses on successfully navigating common challenges, or "landmines", faced by parents in the neonatal intensive care unit (NICU). It discusses several key landmines including welcoming parents for the first time, helping parents bond with their infant, and promoting breastfeeding. The document offers insights from surveys of over 200 parents who had infants in the NICU. It provides tips for nurses on empowering parents, supporting parent-infant bonding, and addressing issues such as breastfeeding and pumping. Overall, the document aims to help nurses minimize stress for parents in the NICU by anticipating challenges and standardizing a supportive approach.

1. Successfully
Navigating the Parent
Landmines in the NICU
DEB DISCENZA, FOUNDER,
PREEMIEWORLD, LLC & INSPIRE’S PREEMIE COMMUNITY
©2016 PREEMIEWORLD, LLC. ALL RIGHTS RESERVED.
HTTPS://PREEMIE.INSPIRE.COM & WWW.PREEMIEWORLD.COM

2. Conflict of Interest Disclosure
DEB DISCENZA
©2016 PREEMIEWORLD, LLC. ALL RIGHTS RESERVED.
WWW.PREEMIEWORLD.COM
This is to certify that Deb Discenza nor PreemieWorld, LLC
do not have conflicts of interest that accompany this
presentation.

3. Agenda
S U C C E S S F U L L Y N A V I G A T I N G P A R E N T L A N D M I N E S I N T H E N I C U
1
2
3
4
5
Introduction
Empowering the Families in the NICU
Supporting Families in the NICU & Home
Working Through Tough Times in the NICU
Q&A

4. ❤️ NICU Nurses
💉Parent Landmines
✔️Provide Tips & Key Points
👶Preemie Parent Voices
Part One: Introduction

5. Love for NICU Nurses
W H Y Y O U M A T T E R T H E M O S T T O P A R E N T S
NICU Nurses
are Angels
You love the babies
You are our connection to the NICU
You are the glue to the NICU
You are the person we remember
the most after the NICU stay

6. What are Parent Landmines?
S C E N A R I O S T H A T C R E A T E H I G H S T R E S S W I T H P A R E N T S
Parent Landmines
Intro to the NICU/Trauma
Parent Bonding Challenges
Breastfeeding & Pumping
Life Challenges Beyond NICU
Baby’s Health Declines
Baby is Dying/Dies

7. Inspire Preemie Community
H T T P S : / / P R E E M I E . I N S P I R E . C O M
28,000 MEMBERS
WORLDWIDE
I AM THE FOUNDER
OF THE FORUM AND
THE MODERATOR
IN THE NICU, AT HOME,
IN SCHOOL, ADULTS, PREEMIE
ANGELS, PREEMIES WITH CP,
PREEMIE HOPE, PREEMIE TIPS
PARENTS, GRANDPARENTS,
ADULT PREEMIES,WOMEN IN
HIGH RISK PREGNANCIES,
PARENTS OF ANGELS,
PARENTS OF DISABLED
PREEMIES

8. Survey Demographics: Responses
H T T P S : / / P R E E M I E . I N S P I R E . C O M
• 182 Female
• 26 Male
212

9. Survey: Gestational Age at Birth
20
%
31
%
49
%
MICRO-PREEMIE
MODERATE TO LATE PRETERM
VERY PRETERM
102 RESPONDENTS
41 RESPONDENTS
65 RESPONDENTS
*data & insights generated from (July 2016) survey of Inspire Preemie Community

10. Survey Demographics
H T T P S : / / W W W . I N S P I R E . C O M / G R O U P S / P R E E M I E
• Global: Responses from most continents
• 60+ pages free text responses

11. Part I: Empowering Parents in the NICU
S U C C E S S F U L L Y N A V I G A T I N G P A R E N T L A N D M I N E S I N T H E N I C U
NICU Intro
Bonding
Breastfeeding
• Entering the NICU for the first time.
• Seeing the baby and medical equipment.
• Control over connecting with infant
• Fear of medical equipment
• Pumping Breastmilk
• Breastfeeding
• Working with team members or not

12. Quick Share: How does your NICU welcome the parent for the first time?
Landmine #1: Welcoming the Parent

13. Entering the NICU for the First Time
Deb’s Take
• Middle of the night birth
• No welcome packet
• Wheeled to NICU post-
birth
• Trauma and Back to
Room
1.
• Next Day Wheeled to
NICU
• At Bedside with Incubator
• Had no idea what to do
2.
• A nurse came over and
said hello and showed me
a couple of things to do
and then left.
• Alarms went off and I
screamed out for the
nurse.
3.

14. Survey: What made you feel the most welcome in the NICU?
31
%
36
%
33
%
PUMPING ROOM
RESOURCE ASSISTANCE
NICU NURSE
PROVIDED A BREAST PUMPING
ROOM IN THE NICU
GIVEN RESOURCE ASSISTANCE
SUCH AS FREE OR REDUCED
PARKING PASSES
GREETED BY NICU NURSE
UPON ARRIVING AT BEDSIDE
The Top 3 Items Out of a List of 7 Items
*data & insights generated from (July 2016) survey of Inspire Preemie Community

15. NICU Families Speak: Welcome
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
The nurses informed me that I had access to my
daughter 24/7 and to come anytime I felt well
enough. Not knowing anything about the NICU
or what was to come, that made a world of
difference in reminding me that I had an important
role as the parent.
— MOTHER, VERY PRETERM INFANT

16. NICU Families Speak: Welcome
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
We entered the room that had both babies and
each nurse had a sign up welcoming each baby,
by name, to the NICU. The sign said, “Happy
Birthday” and was decorated in pink and white.
Each nurse told us, “Congratulations on your
beautiful twin daughters, do you have any
questions?” We saw our babies for the first time
and fell in love.
— MOTHER, MICRO-PREEMIE TWINS

17. Tips: Bonding for Parents, Baby, Nurses
Personalize “Your daughter” “Your Son” “I love the name!”I
Intro Introduce yourself and talk about what you are doing for their child.II
Reassurance All emotions are normal and the baby is in the best place.III
Parenting Show them what they can do right now to help their baby.IV
Patience Rollercoaster reminder but that parents are KEY.V

18. Key Points on Parent/Nurse Bond
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Parent Ownership
Promoting that bond making the
baby and the NICU less scary.
Parent/Nurse & NICU Bond
Feeling welcome, feeling useful.
Part of the team, no degree
needed.
Communication
Starts a healthy dialogue between
parent and professional.
Building Trust
This will be very helpful later on
during the tougher discussions.

19. Quick Share: How does your NICU help parents bond with their infant?
How do you give them a sense of control?
Landmine #2: Bonding & Control Over Infant

20. Trying to be a mother in the NICU
Deb’s Take
• Holding my daughter was
bittersweet.
1.
• Doing Kangaroo Care
really changed my
approach in the NICU. I
could do something!
2.
• Doing the first bath was
both scary and delightful I
re-wrote the birth
experience in my head.
3.

21. Survey: What helped you most in bonding with your baby in the NICU?
21
%
20
%
20
%
20
%
19
%
TALKING GENTLY TO MY BABY
HOLDING MY BABY
KANGAROO CARE
SIMPLY TOUCH MY BABY
READING SOFTLY TO MY BABY
*data & insights generated from (July 2016) survey of Inspire Preemie Community

22. Survey: How did Kangaroo Care Help You Best?
18
%
18
%
17
%
15
%
15
%
10
%
7%
VALUABLE MEMBER OF TEAM
COMFORTED ME
COMFORTED BABY
HELPED IN BABY CARE
EMPOWERED TO HELP BABY
INCREASED BREAST MILK
*data & insights generated from (July 2016) survey of Inspire Preemie Community

23. Tips: Parent/Infant Bond
Remind “The baby knows your voice and your smell.”1.
Love Notes! On days of no stimulation - Love Notes help greatly.2.
Kangaroo Care It has great benefits for Mom and baby.3.

24. Key Points on Parent/Infant Bond
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Connection
Direct connection or indirect
connection - it all helpful.
Increased Visitation
When parents have a connection
they are more likely to visit and for
longer.
Breastmilk
When a Mother sees her
importance in the NICU it can
have a significant impact toward
breastfeeding.
Reminders to Parents
Reminding the parents that the
baby knows smell/voice and is
seeking them out for comfort is a
part of the bonding.

25. Quick Share: How does your unit promote breastfeeding?
How is the topic introduced?
How is there a NICU-wide unified message?
Landmine #2: Breastfeeding

26. Breastfeeding
Deb’s Take
• I started pumping on my
own in the postpartum unit
less than 12 hours after
birth.
1.
• Proud of myself though no
one ever praised me
except the postpartum
nurse on Day 1.
2.
• Latching was difficult and
support was not
consistent. I gave up and
kept pumping.
3.

27. Survey: Did you attempt breastfeeding (putting your baby to the breast)?
73
%
27
%
NO
YES
*data & insights generated from (July 2016) survey of Inspire Preemie Community

28. Survey: Who helped you the most with breast pumping
and breastfeeding matters?
14
%
14
%
11%
11%11%
10
%
10
%
10
%
8%
FRIEND
NICU NURSE
LACTATION CONSULTANT
ANOTHER PREEMIE PARENT
NICU NUTRITIONIST
FAMILY MEMBER
POSTPARTUM NURSE
NEONATOLOGIST
POSTPARTUM DOCTOR
*data & insights generated from (July 2016) survey of Inspire Preemie Community

29. NICU Families Speak: Pumping
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
It was positive up to the point where I stopped
producing milk. At that point some NICU nurses
were making me feel guilty for not pumping
enough!
— MOTHER, MODERATE-LATE PRETERM INFANT

30. NICU Families Speak: Pumping
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
I had a postpartum nurse dump
my colostrum, telling me that my
micro twins couldn’t have it anyway.
— MOTHER, MICRO-PREEMIE TWINS

31. NICU Families Speak: Pumping
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Our hospital had a wonderful pump room decorated
to look like a nursery. That made it seem more like
pumping at home with a baby. That helped a lot.
They had lights down and lamps. The room also had
extra pump bottles and cleaning supplies for when
you were done . . . every small touch helped.
— MOTHER, MICRO-PREEMIE

32. NICU Families Speak: Pumping
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
I couldn’t get the hand expressing to work for the
colostrum and we brought down a drop in the
syringe, delighted that we got even a bit and the
nurse that was on looked aghast at how little we
were bringing and looked like she was thinking
why did we bother with so little - it upset me and
made me more worried about getting it.
— MOTHER, MICRO-PREEMIE

33. NICU Families Speak: Pumping
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
It was really stressful in low dependency, trying to
establish breastfeeding yet they insisted on tube
feeding her every 3 hours and said I could breast-
feed every 4 hours. Yet how would she be hungry?
. . . the staff were nursery nurses and I felt there was
a lot less understanding and too many differing
opinions, voices, training, etc. and it wasn’t helpful.
— MOTHER, MICRO-PREEMIE

34. Tips: Pumping & Breastfeeding
Milk = Medicine Her breastmilk is the ultimate medicine for her baby.1.
Stress Every drop, every ounce, counts. Period.2.
The Drop-Off Regardless of amount, “Liquid gold!” or “You are doing a
wonderful thing.”
3.
Love Notes Baby talks to Mom . . . with praise and encouragement. The
team can write there to Mom, too. Family and friends as well.
4.
Daily Check-Ins A check-in to see how milk production is going and if the the
team can do anything to help. No judgement, problem-solving.
5.

35. Key Points on Breastfeeding/Pumping
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Positive Introduction
Direct, honest and positive
introduction helps. Trying is key.
Unified Team Message
Regardless of amount, be positive
about the fact that there is milk
coming in right now. If you
support it, make sure the unit is
properly set up with a nice
pumping room.
Daily Check-Ins
No judgement - just asking how
things are going and what the
team can do to assist.
Praise, Praise, Praise
Pumping and breastfeeding a
NICU infant is hard work. Always
praise a parent who is trying.

36. Part II: Supporting Families NICU/Home
S U C C E S S F U L L Y N A V I G A T I N G P A R E N T L A N D M I N E S I N T H E N I C U
Juggling
Competing
Discharge
• Emotions
• Priorities
• Opinions in the NICU
• Opinions of Family, Friends, Public
• Lockdown During Cold/Flu/RSV Season
• Over-Protective Parent
• Pediatrician/Doctor: Developmental Watch

37. Quick Share: How do you support families with siblings, jobs, long
distance commutes to the NICU? How do you encourage
a parent to visit when visitation starts waning?
Landmine #1: Juggling Priorities & Emotions

38. Juggling Life & Emotions
Deb’s Take
• Went back to work part-
time one week after birth.
I used the latter part of the
day to visit my daughter.
1.
• Pumping breastmilk
throughout each day was
hard and exhausting.
2.
• Life happens - Hurricane
Isabel, Mother-in-law
wanted daily phone calls
with full updates. My
emotions didn’t hit
properly until later on.
3.

39. Survey: Which of the following priorities did you have to juggle while in
the NICU? Select all that apply.
31
%
27
%
14
%
14
%
12
%
2%0%HAD TO RETURN TO WORK
PUMPING BREASTMILK
HEALING FROM BIRTH
SIBLINGS AT HOME
OTHER
NONE OF THE ABOVE
*data & insights generated from (July 2016) survey of Inspire Preemie Community

40. NICU Families Speak: Juggling Everything
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Death of identical twin, extremely high risk of death
for my son. I was alone and a hundred miles from
home planning a funeral for one son and making
life and death decisions for the other. Hospital bills,
insurance coverage, finding time to eat, do laundry,
pay bills, self-care, and sleep.
— MOTHER, MICRO-PREEMIE TWINS

41. NICU Families Speak: Juggling Everything
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
My husband was trying to work and in the midst
of losing his job because he was driving me back
and forth [and] visiting the baby himself. [And then]
taking care of household chores and caring for
ourselves.
— MOTHER, VERY PRETERM INFANT

42. NICU Families Speak: Juggling Everything
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Recovering drug addict. I debated sharing this,
but it is a huge aspect of my life and I hope the
more people are honest about this issue, the less
the stigma will become.
— MOTHER, MICRO-PREEMIE

43. Tips: Juggling Everything
Emotions
Remind Parents: All emotions are normal for all
people involved in this.1.
Support Support groups can be a huge help to families on many levels
including priority challenges.
2.
Priorities Like breastfeeding, the guilt is always there. So “just try.”3.
Stops Visiting Call with an update. “Is there anything we can do to help?”4.
Love Notes
When a parent looks forward to these notes, it will likely
increase visitation. But breaks are necessary.5.

44. Key Points on Juggling Everything
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Visitation
Just a simple “Great to see you” is
all is needed. Guilt will only
create more distance.
Check-In on Obstacles
See what obstacles are creating
problems for visitation. See if the
social worker can help or a local
support group.
Support Groups are Gold
A local support group can be
useful on many fronts. Partnering
with one is worth the time and
effort.
Praise, Praise, Praise
Recognize the challenges and tell
the parents they are doing great
and just do the best that they can.

46. Quick Share: How do you advise parents when others do not understand this experience?
How do you advise parents on RSV season and keeping smokers/ill people away?
Landmine #2: Juggling Opinions

47. Juggling Opinions
Deb’s Take
• It helped that my daughter
was coming home on
medical equipment. RSV
season had just started as
well. I sent pics/emails.
1.
• After that passed people
started to be less
understanding about our
ongoing concerns for
developmental delays.
2.
• People got really quiet
once the testing, the
diagnoses and more
came about. I definitely
changed my address book
due to this.
3.

48. NICU Families Speak: Juggling Opinions
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Family and friends who never experienced a
medically-fragile baby often disregarded requests
for hand washing as “first time parent” concerns.
It was frustrating to try to explain to them that
hand washing could mean life or death to our son.
— MOTHER, MICRO-PREEMIE

49. NICU Families Speak: Juggling Opinions
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Family members did not understand and were very
difficult to deal with. NICU nurses provided a
comfort barrier for me, the mother, and took the
burden off of me.
— MOTHER, MODERATE-LATE PRETERM INFANT

50. Tips: Juggling Opinions
Visitors If you encounter family and friends, start with
thanking them for supporting the family requests.
1.
Opinions #1 The visitors may need to receive a blunt story of what happens
when a baby gets sick due to germs.
2.
Opinions #2 Backing up families with visitors is so helpful.3.
Opinions #3
Remind the frustrated parent(s) that they are not alone in this
and blaming the doctors is key. Maybe a letter can be created?4.
Love Notes
A “love note” directed at visitors is very helpful. “My immune system
is going to be weak for a while. Thank you for hand washing!”5.

51. Key Points on Opinions
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Visitors
You backing up the parents on
hand-washing, illness, etc. is key.
Blunt talk also helps. Blame the
doctor helps, too.
Parents Need Validation
Giving visitors a positive view of
the parents is helpful now and for
at home. “They are smart, diligent
parents who know their child’s
health depends on them.”
Support Groups
Support groups can help with
supplies, understanding and more
especially as that baby goes
home.
Love Notes
“Mom I really appreciate your hard
work being my advocate” or “Mom
is a crucial part of the NICU
team.”

52. How do you prepare parents for discharge?
Hand off to the community doctor?
Make sure developmental checks are happening?
Landmine #3: Discharge

53. Discharge
Deb’s Take
• I wanted to take every
team member home with
me. I was THAT nervous!
1.
• I found the pediatrician
nice but not as well-
versed in preemies and
developmental issues as I
would have liked.
2.
• I realized that the
pediatrician was more a
generalist than a
specialist. I was the
expert of my child, the
connecting point of
information and requests.
3.

54. Survey: When your baby was discharged home,
how prepared did you feel?
21
%
48
%
10
%
9%
4%8%RATHER UNCONFIDENT
VERY CONFIDENT
SOMEWHAT CONFIDENT
VERY UNCOMFORTABLE
EXTREMELY UNCOMFORTABLE
OTHER
*data & insights generated from (July 2016) survey of Inspire Preemie Community

55. NICU Families Speak: Discharge
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Desperate to go home (after 3 months)! So yes,
confident. Confident that it would be so much
easier to look after my baby away from the
disempowering situation of the hospital.
— MOTHER, MICRO-PREEMIE

56. NICU Families Speak: Discharge
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Nervous - first time parent of premature twins.
— MOTHER, MODERATE TO LATE PRETERM INFANT TWINS

57. Tips: Discharge & Parent Ideas
Nerves Its normal to feel that way. Just take it one step at a
time.
1.
Concerns Trust your instinct. You know your child better than anyone.2.
Development Always educate parents on specialists and therapists.3.
Support
Always try to connect a parent to a support group before they
head home if that isn’t already happening. That can really help
them cope with anxieties and isolation.
4.

58. Part III: Tough Moments in the NICU
S U C C E S S F U L L Y N A V I G A T I N G P A R E N T L A N D M I N E S I N T H E N I C U
Declining
Health
Death
• Emotions
• Opinions
• Helping the Family
• Team Effort

59. Quick Share: How does your NICU handle giving tough news to parents?
How does your NICU support parents at this time?
How does your NICU maintain trust with parents during this time?
Landmine #1: When a Baby Declines in Health

60. Decline of Baby’s Health
Deb’s Take
• My daughter grew very
sick and I did not know
about it until I arrived at
the NICU. No touch. It
was an infection.
1.
• I wished I had known
earlier. I would have been
there sooner and stayed
later in order to be by my
daughter’s side.
2.
• If my daughter had died
before I got there, I would
have missed a chance to
say good bye.
3.

61. Survey: Did your baby have a point where he/she was
declining and you believe was expected to die?
40
%60
%
NO
YES
*data & insights generated from (July 2016) survey of Inspire Preemie Community

62. NICU Families Speak: Baby Declining
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
The baby got NEC when under 2 lbs in weight,
three weeks old. The nurse told me when I came
in, saw my face and gave me an enormous hug.
I will always remember that hug - it is what I
needed (the baby survived).
— MOTHER, MICRO-PREEMIE

63. NICU Families Speak: Baby Declining
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Calmly. The team was professional and told
me everything matter of factly.
— MOTHER, MICRO-PREEMIE

64. NICU Families Speak: Baby Declining
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
The doctors always gave me worst case scenarios
This worked well with me. [The baby’s] nurse was
the best. She sat with me and discussed everything I
had questions about. I so love the NICU staff.
— MOTHER, MODERATE-LATE PRETERM INFANT

65. NICU Families Speak: Baby Declining
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
The NICU team was supportive and
compassionate. They were also very
straightforward with the information
provided.
— MOTHER, MICRO-PREEMIE

66. Tips: Baby’s Decline
Trust From the top down, building trust is important and
starts with the introduction to the NICU.
1.
Communication Regular updates continues trust.2.
Supportive Showing emotion is perfectly okay. The parent needs it.3.
Map Steps
Always frame medical plans in terms of steps being taken so
the parents know the full plan. This includes the positive and the
negative. Always update as things change. Always ask if there
are questions.
4.
Love Notes Communication from the baby, from the team.5.

67. Key Points on Baby Declining
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Honesty = Trust
Parents will trust you when you
are honest about the situation.
Otherwise “Dr. Google” will be
consulted.
Directness Keeps Trust
Parents will pick up on someone
trying to be indirect.
Willingness to Keep Trying
Parents whose NICUs were
willing to think of other ideas,
even going to another NICU, were
grateful. This is about the baby.
Love Notes
A piece of paper can go a long
way to speak for the baby, the
NICU and the parents.

68. Quick Share: What procedures are in place to support a family
as a baby dies? After a baby dies? Who is involved
with the process ?
Landmine #2: When a Baby Dies

69. Death of a Baby
Deb’s Take
• My daughter did not die.
though we had some very
close calls. I have talked
with families where they
fought the NICU to try and
save their infant.
1.
• Those same families had
horrible experiences as
well as the aftermath with
the team.
2.
• I also see the side of the
NICU team, as they watch
a baby suffer while the
families try to continue
care that won’t change.
3.

70. 11 died during the NICU stay; 3 died after the NICU stay.
families on the survey whose babies died

71. NICU Families Speak: Baby Dies
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
They were amazing. All of the nurses were
affected by her death. On the night of her death
one of the docs came straight to the ER to see if he
could do something to revive her. When she coded
he stayed with us, hugged us, did everything he
could to comfort us. When she passed, the doctor
helped us with the service for our daughter and
spoke beautiful words in the ceremony. Many nurses
and NICU staff came to the service . . . they are
family to us [to] today.
— MOTHER, MICRO-PREEMIE

72. NICU Families Speak: Baby Dies
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
We had to hold our baby for the last time in
the same uncomforting ugly room. The lighting
was depressing and everything looked orange
and even more sad in our photos. They had the
nastiest smelling soap and lotion for the little bath
we gave the baby first. We would have loved to
have him smell like Johnson & Johnson’s just once.
They did their best taking some other pictures for me
after he passed but they were so depressing I just
threw them away.
— MOTHER, MICRO-PREEMIE

73. Tips: Baby’s Death
Emotion Seeing your emotions helps them cope.1.
Communication Be clear how things will happen as support is removed, time with
baby and hand off information on organizing an infant’s funeral.
2.
Supportive Having clergy there, social work there is key. Doctor, too!3.
Family Time
The family needs a quiet space to spend time with their infant.
Ask a support group to fundraise to set it up, decorate it and
provide information for social workers to hand out.
4.
Love Notes Sending a love note from the team would be so welcome.5.

74. Key Points: When a Baby Dies
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Parent Grief
The parent’s grief is shaped by
those last days, hours, minutes
and what you say to them.
Having a Plan
Having a clear plan on how to
handle things is key to helping a
family focus on what is most
important: their beloved infant.
Supportive Team
A team surrounding a family is
helpful. So is expressing emotion.
They want to know their baby
meant something to you.
Love Notes
Communicating with a note to the
family later on really makes a
difference. The family will
treasure it because it means their
baby has not been forgotten.

75. Ending Summary
S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U
Trust, Day 1, Minute 1.
Having a parent’s consistent trust
i.e. key to all of the tough
discussions that happen later. It
could save time, and a life.
Mixed Message.
I found that mixed messages were
a constant in the surveys. This
goes across every landmine.
Consider doing an assessment of
your NICU and make changes.
Respecting Parents.
Regardless of background or
education, these parents are the
expert of their child. They knew
him/her first.
NICU Nurses are Special.
You have a unique position in the
NICU. You see everything
surrounding that baby. You are
part of the family.

76. Contact Information
P L E A S E F E E L F R E E T O C O N T A C T M E
Deb Discenza, PreemieWorld
deb@preemieworld.com
+1 703-678-3922
P.O. Box 10733
Burke, Virginia 22009
United States of America

77. Ask away!
Any questions?
DEB DISCENZA, FOUNDER
PREEMIEWORLD, LLC & INSPIRE’S PREEMIE COMMUNITY
HTTPS://PREEMIE.INSPIRE.COM
WWW.PREEMIEWORLD.COM