Baby Noor has a meningocele: Medical discussion

Meningomyelocoel is a congenital defect where the spine doesn't close at the bottom...the children with this often have nerve damage causing them not to walk, and have bladder and bowel problems...if you close it, however, many develop hydrocephalus, so have to have the water shunted from their brain so it doesn't make the head large and destroy the brain...

Despite these many problems, most docs have a couple of these kids -- or even adults-- with these problems in their practice...(The Spina Bifida Association estimates 70,000 people have this problem)...

Having a child like this is hard for parent...and, of course, for the child or adult, it is an ongoing challenge to their lives...despite this, many adjust well...

Most use crutches, and need surgery to be able to walk...More important medically, many have to have shunts placed in their head and replaced at intervals until they grow up, and we GP's mainly see them for bladder infections...and complications of neurogenic bladder...by age 30 they may end up with an "ileostomy loop" to drain their urine, and have kidney stones...

The more severe cases may be borderline retarded, but meticulous care to prevent damage from hydrocephalus makes it less likely. And, ironically, the height and size of the spinal defect has little relationship to the ultimate IQ...and even those "mildly retarded" tend to be verbally adept. (When I worked many years ago at a training school for the retarded, I thought one man with this problem was a staff member...it turns out that he was placed in the 1950's at time of birth, because doctors told his parents he would be retarded...If he had been born 15 years later, undoubtably he would have been kept at home, found a job and married)....

So baby Noor will have ongoing medical problems, but the alternative is that she will die, and most normal people think that she should have a chance to live...

Actually, the dirty little secret is that many US children diagnosed with this are killed by late term abortions...even though this is a common problem, and despite hydrocephalus complications, many (including the boy mentioned in the link) do quite well....

However, now there is experimental inter utero surgery to fix the problem...

Anther dirty little secret is that many of the "infant euthanasia" cases in the Netherlands have this congenital problem...

My latest audio digest tape on medical ethics laments we can't do that in the USA...as does the NYTIMES (FR link discusses copyrighted story)

Without treatment, most of these kids die...

Once I was at a conference at Johns Hopkins, one student argued with a surgeon that surgery wasn't warranted, and why not let them die...and the surgeon dryly answered, because not all of them die, and if you DON't do surgery, the child suffers even more... and I describe one such case in an earlier blog entry...

As one critic to the BMJ article wrote:
Last week, I was watching a Tellie show on evolution...there was a fossil of Homo erectus found that had evidence of an injury that had healed, implying that someone had to care and feed for the injured person...the narrator remarked that this showed a major indication of evolution, since it showed compassion...
Caring for the sick and crippled and retarded is not "logical". It costs money. It keeps people from doing more important things. But the retarded teach us the lessons of courage, compassion and faith.
And despite the claim of Eduard Verhagen, who told the BMJ at the time, "It is time to be honest; all over the world doctors end lives discreetly, out of compassion", the dirty little secret is that human beings, since the time of homo erectus, have NOT always ended lives, but much more often we see those "meaninless" people assisted in their daily living: helped, cared for, and loved....and that it is such compassion that make us fully human.

So heads up and praise to the Georgia National Guard for being fully human...

Baby Noor, because of the love of her family and the loving concern of some compassionate American soldiers, will at least have a chance to live with her handicap...