Living with spina bifida and hydrocephalus in developing countries carla verpoorten
Our first aim is to provide useful information aboutthe natural history of children born with spinaldysraphism and how to prevent more disability if thechild survives
As people working in rural rehabilitation know a lot about other movement disabilities (polio, cerebral palsy) and also about secondary or additional disabilities (contractures, spinal curve, developmental delay), we thought it would be good to build on what they already know and practice.
So if they can learn about the specific needs of spina bifida children, they can help them a lot by sharing their experience : motor function disorders (polio, cerebral palsy) or sensory function disorders (lepra).
The initial management of a newborn with spina bifida isintended to minimize complications. The sac should be covered immediately with non-adhering sterile dressing and kept moist with sterile saline. ? This will minimize infection and injury to exposed neural elements
A thorough clinical examination is necessary to assessthe anatomic and functional levels of defect, headconfiguration and the presence of other anomalies.
How to care for the childwith spina bifda if surgeryis not safe ( infected cele)or not available ? ?
Progressive hydrocephalus can be monitored byneurological examination, developmental milestones andfrequent head circumference measurements.
Hydrocephalus can be controlled with aventriculoperitoneal shunt - or by ETV ?
Some children with enlarged ventricles do not developprogressive hydrocephalus and can be managed withoutshunting.
To prevent further and more disability, those childrenwith spina bifida who survive after spontaneous closureof the back and with progressive – but not lethal –hydrocephalus need our help and support to find apossibility to get a shunt.
the future of the child will depend on how serious the defect is, on medical treatment and general care on special training and on family and community support.
in all children with spina bifida functional goals should be established. these goals vary with the severity of motor and sensory defect, and with the child’s developmental progress.
the higher up the back the defect is or the more severely the spinal cord is affected, the worse the paralysis and this child will need a wheelchair early the child with a defect that is low down on the back usually has less paralysis and has a good chance of walking with or without crutches.
most children with lesions below S1 can walk unaided, those with lesions above L2 are wheelchair dependent. the child with an intermediate lesion is capable of brace and crutch-assisted ambulation but often deteriorates in the absence of careful management.
to establish a stable posture with minimal flexion deformity (avoiding contractures) and to maximize mobility. mobility implies more than walking and is essential to attain social maturation and educational and vocational goals.
often these children are late in learning basic skills for self-care. - this is partly because of the disability. - but it is also because their parents often overprotect them and do everything for them. it is important for parents to help these children to do more for them selves.
a child with spina bifida usually does not develop the same bladder and bowel control as other children do. but most children can be helped to take care of both their bladder and bowel so that they stay dry, clean and healthy. therefore it is extremely important that rehabilitation workers and family members help the child work out a good bladder and bowel program.
are to prevent renal damage by preventing infection and by treating outflow obstruction and to achieve social continence. the ideal method of urine control empties the bladder completely and in a clean, regular, easy and self- reliant way (clean intermittent catheterization).
are to prevent constipation and to achieve continence the child can learn to help the stool come out, with assistance, certain times of the day. this kind of “bowel program” can greatly increase the person’s self-confidence and freedom for school, work and social activities.
? ?In summary, we can say that the chances of a childwith spinal dysraphism , leading a fairly normal lifeare good, provided that- we can manage the shunt problems, ?- and avoid important medical risks : skin problems (pressure sores), ? renal damage, ? and contractures ?
? in spite of their disability it is important for them to develop their bodies, their minds and their social abilities as much as possible.
we can help the child to become more self-reliant : by home training and encouragement to master basic self-help skills such as moving about, dressing, toileting. by education: learning of skills that make keeping a household, helping other people and earning a living more possible.