Wednesday, May 6, 2009

Who's worth the effort?

Going through my Paediatric Surgery textbooks, while preparing for my exams next Thursday, I have been reading about a number of babies with many congenital deformities and syndromes.

Theologically, we have all wondered at the difficult questions about why there is so much suffering in the world, and why innocent babies go through so much pain and difficulty.

Practically speaking, in my department, we are still discussing whether it is 'worthwhile' to operate on babies with meningo-myelocoeles and neurological deficits (for instance). These babies have a deformity of their spines, and are born with a lump over their lower backs, containing brain fluid and bits of poorly formed spinal cord. Many of them will never be able to walk, pass urine or stool normally, and remain dependent for most of their lives. They will require a number of operations (which will not really improve their overall condition), and will die earlier than others their age.

One group of people feels these babies should be allowed to die, perhaps by permitting them to develop meningitis, and generally not being active about their treatment or neglecting them in other ways.

Another group believes we should operate to cover this spinal cord defect with skin after explaining the situation to the parents, and see how things go from there.

In the west, these defects are picked up on ultrasound before the child is born, and usually the child is aborted (which is almost the same position as the first group).

I have seen some of these children who were operated while babies, come back with all their problems around six or seven years of age. Sometimes, the parents are discouraged and upset, and not too keen on further treatment.

Many times, however, living with this child with disability has brought so much joy to these parents. They love the child dearly, and want us to do whatever is possible to help. They empty the child's bladder every three hours, and give enemas everyday to empty bowels. They carry the child around wherever they go. There is sorrow at the situation, but the child has enriched their lives in so many ways.

I know it is a difficult question: but I would like to know what the 'non-medical' folks among us think about this. Many of our decisions are made because of economic implications, or because of what the parents want. I suppose there are no clear-cut answers either. Here is an interesting video we came across last year.


Juliana Abraham said...

This may be coming from my western mind-set, but I feel that if, in the medical field, the technology, knowledge and expertise exists to help a baby survive - or if it were my baby - I would hope for any possible measure to be taken to keep the baby alive.

That said, I think it's easier for me to feel this way than it may be for others since we could find a way to manage. There are support groups for parents with children with disabilities, there are government programs to help with some medical expenses that we would quite likely qualify for, etc.

I think these are tough questions though. I'd be interested in hearing your perspective, Pradeep.

Anugrah said...

As inspirational as the video was... I guess there isnt one right answer about how far one should go (worthwhile) to save a baby...
It depends on so many things...
No doubt we need to be building a society in which parents would have access to resources and support of the kind Juliana was talking about. When we get there, then it would always be worthwhile... But in the absence of those, I don't think there could be a single correct response.