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What can be done once a diagnosis of spina bifida is confirmed?
This is a difficult and very complex issue. The prognosis of a child affected by spina bifida is difficult to predict accurately and will be influenced by several other factors.
One important factor is to search for the presence of other associated abnormalities such as a cephalocele. Presence of this makes the baby's prospects pretty bleak. It is also important to try and look for abnormalities in other organs such as the heart, lungs and bowel. Presence of such anomalies alongside a spina bifida defect may actually signify a possible underlying genetic or chromosomal disorder. If facilities allow, the specific disorder may be screened for. Such disorders, if confirmed, mean the outlook is not good.
In a case of an isolated spina bifida defect, with no evidence of any other abnormality, the prognosis is significantly better. The management of any such case will involve, among others, the obstetrician, radiologist, clinical geneticist, paediatrician and a paediatric neurologist. This kind of intensive consultation can overwhelm the parents and is always handled carefully, to keep the parents in control.
A detailed discussion with the parents is required to explain the medium and long-term prospects. All questions will be exhaustively answered before the parents make any major decisions. Parents invariably make all the major decisions and are encouraged to take their time in reaching any decisions, which is never easy.
If the spina bifida is isolated and there does not appear to be any underlying genetic disorder, what are the likely long-term prospects for the affected child?
Again, one has to be cautious when pronouncing the long term prognosis. However the outlook is much better for such a child. For open spina bifida, paralysis of the lower limbs is virtually invariable. Complications such as the development of hydrocephaly may develop but surgical techniques have improved significantly and shunts are used to relieve this with modest success. (Shunts are devices used to shift fluid from the brain channels to the blood circulation.)
Many spina bifida children have now grown into adults who have made a success of their lives. It is important when citing this not to trivialise the considerable problems and obstacles that such a child is bound to face.
What is the situation regarding closed (occult) spina bifida?
As mentioned before, these defects are covered with intact skin. The prognosis is almost always good and these children tend to have no neurological deficit. They are therefore capable of leading full independent lives.
What is the general trend in cases of spina bifida diagnosis?
This is an intensely personal decision. Overall, most parents opt for termination of pregnancy in cases of "open" spina bifida. Whether this trend will evolve in the opposite direction over time remains to be seen.
What if the diagnosis is that of a cephalocele rather than spina bifida?
As mentioned before, with a cephalocele, the bony defect is on the skull rather than the spine. Again, if what is protruding through the defect is only a fluid-filled bag of membranes, the prognosis- is good and the defect can be repaired after delivery.
However, in many cases, the brain itself is protruding through the defect and the head remains abnormally small, so-called "microcephaly". In other cases, there is hydrocephaly with poor brain development. In such cases, there is usually serious neurological deficit and the prognosis for the baby is poor.
If there is an associated genetic or chromosomal disorder, then the outlook may verge on the hopeless. Again, the various relevant experts will give their opinion and advice before a decision is made on how to proceed.
If pregnancy has not been terminated and/or the diagnosis is made late in pregnancy, what will be the method of delivery?
Since, in many cases,, the situation is unsalvageable, an endeavour is made to achieve a vaginal delivery. If, however, the prognosis for the baby is judged to be promising and where delivery through the vaginal route risks causing trauma, a caesarean section may be opted for.
What are the chances of a cephalocele recurring?
It is rather high, at one in twenty. There is, in other words, a 5 per cent chance of the child in a subsequent pregnancy being similarly affected. Looking at it positively, the child in a subsequent pregnancy has a 95 per cent chance of not being affected.