Re: Margot

Posted By CCF Neuro[P] MD, RPS on December 03, 1998 at 18:00:03:

In Reply to: Margot posted by Cristobal on December 03, 1998 at 12:06:11:






One of my 7 month old (5 1/2 corrected) twin daughters has been diagnosed with severe cystic encephalomalacia (both posterior parietal lobes and occipital lobes), dolichocephaly and diffuse atropy further to a third CT scan. Also mentioned in the report is that the subarachnoid CSF spaces and both lateral ventricles are prominent, consistent with diffuse atrophy.
We expected some bad news (we know she is hemiplegic and has hypertonicity of all limbs) but are having a bit of trouble understanding the implications of this diagnostic. Can you help?
Clinical info is that she was premature, was the donor in a twin/twin transfusion, severely anemic and suffered subarachnoid and ventricle hemorrhages.
Thank you in advance
Dear Cristobal:
I am very sorry to hear about your daughter.  Twinning as you probably know better than myself, comes about when one fetus "steals" the blood and nutrients from the other fetus during development.  This causes the one infant who was stolen from to be much smaller in size and usually this infant can have problems that arise from lack of blood, ie. oxygen, essential nutrients.  It sounds like your daughter has had such a problem where the development of the brain was severely compromised.  The cystic lesions usually mean that the lack of blood reduced the oxygen content in that area and brain cell died (this is of course made worse if there was an infection occuring also during pregnancy).  As the cell die during development, there are areas of cysts (fluid filled areas) and lack of tissue (atrophy).  My suggestion would be to accept that there has been damage to the brain of your daughter.  What is needed is to optimize her development as best as possible.  Early intervention concerning occupational therapy,
physical therapy and a speech therapist.  Again, I am sorry to hear such news.  A good pediatric neurologist and cerebral palsy care team will also be needed.  Best of luck, and hang in there.  It is a tough road to travel.  Let us know if we can help in any way.
Sincerely,
CCF Neuro[P] MD, RPS