2. Our first aim is to provide useful information about
the natural history of children born with spinal
dysraphism and how to prevent more disability if the
child survives

3.  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.

4.  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).

5. The initial management of a newborn with spina bifida is
intended 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

6. A thorough clinical examination is necessary to assess
the anatomic and functional levels of defect, head
configuration and the presence of other anomalies.

7. How to care for the child
with spina bifda if surgery
is not safe ( infected cele)
or not available ?
?

8. Progressive hydrocephalus can be monitored by
neurological examination, developmental milestones and
frequent head circumference measurements.

10. Hydrocephalus can be controlled with a
ventriculoperitoneal shunt - or by ETV ?

11. Some children with enlarged ventricles do not develop
progressive hydrocephalus and can be managed without
shunting.

12. To prevent further and more disability, those children
with spina bifida who survive after spontaneous closure
of the back and with progressive – but not lethal –
hydrocephalus need our help and support to find a
possibility to get a shunt.

13. 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.

17.  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.

19.  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.

24.  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.

25.  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.

27.  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.

28.  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.

29.  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).

31.  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.

34. ? ?
In summary, we can say that the chances of a child
with spinal dysraphism , leading a fairly normal life
are good, provided that
- we can manage the shunt problems,
?
- and avoid important medical risks :
skin problems (pressure sores), ?
renal damage, ?
and contractures ?

35. ?
 in spite of their disability it is important for them to
develop their bodies, their minds and their social
abilities as much as possible.

36. 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.