Visit to CHOP

Yesterday we went to CHOP and had three tests: the fetal MRI, an ultrasound, and a fetal echocardiogram. A consultation was held with the doctor at the end of the day.

There are three areas of Jensen's brain that did not develop correctly.

1. the corpus callosum - the connection between the left and right sides of his brain did not develop at all.
2. cerebellum - his cerebellum has a hole (for lack of a better word) in it. They believe this was caused by bleeding in the brain early in pregnancy.
3. The right hemisphere of his brain did not develop correctly either. Jensen developed an Arachnoid Cyst that is putting pressure on the right side of his brain and growing.

I can't remember everything that I was told yesterday and what I do remember I'm not entirely sure it's accurate. But here it goes...

When the doctor leads us to the conference room we sit down to a table that is empty except for a box of tisses with "Do NOT remove from this room" written on the side of it. When the doctor places the images of Jensen's brain in front of us and begins to point to certain areas while he explains, he is trembling. He explains about the 3 areas of the brain and I try to listen but I wonder why he's shaking.

The doctor says he can guarantee these things: Jensen will not lead a normal life, he will have seizures, he will have pain, and he will be severly mentally retarted. Also, depending on how long he lives he will be instituionalized because it will be too much to care for him at a home setting.

The maybes: He may never walk, talk, swallow correctly (choking and getting pneumonia often), control his bladder or bowel movements, his brain may bleed again, there are hundereds of maybes.

Please understand that I DO want to hear from my friends and family but it is difficult enough to write this blog. You can call and write emails but I most likely won't reply right away since the information is still so new.

I will post more as I remember....

email: nora.oswald@yahoo.com