From: geb@dsl.pitt.edu (gordon e. banks)
Newsgroups: sci.med
Subject: Re: spina bifida information needed, please!
Date: 22 Aug 92 01:27:42 GMT
Organization: Decision Systems Laboratory, Univ. of Pittsburgh, PA.

In article <1992Aug20.043005.22931@news.eng.convex.com> cash@convex.com (Peter Cash) writes:
>
>There are three forms of spina bifida: _spina bifida occulta_,
>_meningocele_, and _myelomeningocele_. [1] Only the last form involves the
>nervous system, and may result in disabilities--or, if supportive treatment
>is not given, death. The seriousness of myelomeningocele varies according
>to what portion of the spinal cord is damaged, and the degree of damage to
>the cord.
>
Spina bifida occulta is not discovered except by accident, so we
obviously weren't talking about that.  Meningocele is less common
than meningomyelocele.  It can easily be handled surgically.
The case in question was undoubtedly a meningomyelocele, or more likely,
meningomyelocele *plus* other anomalies.

>Spina bifida alone does not affect the cerebral cortex, and does not cause
>mental retardation. 

Spina bifida alone is less common than spina bifida plus other
anomalies.  We aren't talking about just spina bifida alone.

>Mental retardation is, however, one of the possible
>indirect side effects of spina bifida, because this defect often causes
>hydrocephalus ("water on the brain"). Hydrocephalus can be treated (usually
>with a shunt to drain the excess fluid), and the damage may be minimized or
>prevented entirely. Meningitis is another frequent corollary of spina
>bifida. 

The shunting can prevent growth of the size of the head to vast
proportions (which make nursing the patient difficult), but it
won't restore cerebral function in those who have the associated
anomalies.  That is why I think it behooves parents to have the
infant assessed for the presence of the common anomalies (meningomyelocele
alone is not the usual case) before agreeing to such surgery.  

>I do not wish to trivialize myelomeningocele: it is always serious; it can
>be horrible. Often, there will be a series of complications, and
>concomittant traumatic medical procedures. However, the prognosis is
>nowhere as unilaterally bleak as Dr. Banks suggests.
>
>To give you a more encouraging picture, let me quote from a fullow-up
>study by Curtis, Butler, and Emerson of 100 children with myelomeningocele
>who were over 12 years old [2] :
>
How were these patients selected?  Were these institutionalized
patients?  Many of the bad cases won't make it to 12 years old.
Certainly those who are living at home and going to school are
ones that had no brain anomalies or only had uncomplicated 
hydrocephalus.  In order to get an idea as to what the course
is going to be you have to follow the patients from birth
and follow the first 80 with neural tube defects.  I suspect they
are talking about patients that only had meningomyelocele or
uncomplicated hydrocephalus.  These are a minority of all that
are born with the defect.  

>This study gives us some idea of what can be expected if the child with
>spina bifida survives past the age of 12; Dr. Banks is therefore not
>correct when he states that saving the lives of these children results only
>in a life of misery and institutionalization. If the effort to save the
>life of the child is successful, it is often worthwhile. 
>
Read what I said again.  I said an assessment of the brain function
should be made before deciding if the child is going to be 
salvagable with a good quality of life.  If the brain is OK,
then go ahead.  This can usually be done before wheeling the
child off to the OR.  Unfortunately, it often is not even offered,
because there is a bias toward "doing everything" regardless.
The assessment comes later, but by then the child is fixed up
enough to last a few years at least.  I recommend a visit to
a chronic facility for the severely retarded.  Ask them to show you the
patients who were born with neural tube defects.  The spina
bifida association is a fine organization for the milder cases
that are functional and living at home and attending school,
but I'll bet few of the members are aware of these "hidden" cases
of spina bifida.  If you are in town, I'll take you out to
Western Center "School", where those in Western Pennsylvania
are kept.  I think your optimism is colored by the fact that
you have only met the best segment of the population.




-- 
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Gordon Banks  N3JXP      | "Skepticism is the chastity of the intellect, and
geb@cadre.dsl.pitt.edu   |  it is shameful to surrender it too soon." 
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