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

February 22, 2008

We found out that we were pregnant at the end of August 2007....very excited. This was a planned pregnancy and a wonderful addition to our existing family...Jared (2 years old)...Brianna (14 years old).



During my second ultrasound we find out that we are having another boy. I'm elated. I can't help but think that Jared and the new baby will the best of friends.

At my next Dr. apt. I am told to have another ultrasound...the kidneys hadn't developed yet...no worries...the ultrasound was too early to detect them. Have the next US and there they are!



We pick out a name...Jensen. This is my husband's choice and I love it. There won't be many other children in his Kindergarten class with that name!



A few days after my 3rd US (the one that confirmed the kidneys) I am asked to have a level 2 US at Lehigh Valley (LV)...there is excess water on the brain...OK I think to myself, this can be corrected with surgery..still no worries.



At LV we are told that our son's brain is not developing correctly...they tell us he has what is called agenesis of the corpus callosum (ACC). This means that the connection between the left and right sides of his brain did not develop. AND his brain is not symmetrical. My husband and I are heart-broken. The doctors suggest that we test for chromosome count to see if there are any issues there (down syndrome, still born, death soon after birth). At first I didn't want to know. But, when the dr. explained to me that I could hold my baby when he's born knowing ahead of time that he's going to die, rather than try to resuscitate him, I decide to have the test.



The results come back and his chromosome levels are normal. This is a huge comfort to my husband and me. The only thing we would be looking at now is possibly mental retardation and that's not a problem. I can handle retardation...not death.



My husband and I start cleaning out Jared's closet (I need to have a yardsale by the way). We separte the infant toys and clothing from the things that Jared needs now. I do few loads of laundry and put all the baby clothes in Jensen's dresser.



Our second appointment at LV is not comforting. If I had a photo of the way the doctor looked at me I wouldn't need to write another word. You would understand the trouble my baby MIGHT be in. At this appointment we are warned that our child may never walk (which also means he MIGHT walk). Here we are requested to have a fetal MRI at the Children's Hopital of Philadelphia (CHOP). Basically, the doctors don't know. But how could they? The hope for the visit to CHOP is to gather as much information as possible to help my son. I know this is a good thing but I'm scared out of my mind. I'm not convinced that Jensen will survive. The doctor used words like brain destruction, severe mental retardation, etc. The doctor fears that Jensen may have more than ACC but we don't have a name for it.



This is where we stand now. We have not had our visit to CHOP as of yet. It's been a rollercoster ride for us. We're doing our best to stay positive but it is difficult. Hoping for the best and preparing for the worst seems like an oxymoron. I have to remember that God has given us two beautiful, healthy children and who wouldn't feel blessed by that?