Friday, May 2, 2008

Update from Pediatric neurosurgeon

Whew ~ that appt took all day long almost. I just now got to work and have a lot of catch up to do. Although my phone is ringing off the hook though so I am came to update real quick. For once we actually got some encouraging news.......a little. At this point anything that sounds halfway positive we call encouraging. This dr was wonderful and was really on our level. He stayed in the room with us for about an hour or so explaining everything to us. He then answered a lot of questions. He said that all the doctors so far have been right that they cannot give us a definitive answer. He said the level of severity of the problem can range from severe, to just mild learning disabilities, to normal. He then started going over his finding on the MRI films from Dr twickler. He said he disagrees that this is Vaco Hydrocephalus.......he said correction not that he disagrees, but that there is no way to tell until the baby is born. He said this is what he does day in and day out and it's even hard for him to say it's hydrocephalus or vacro hydrocephalus. He can only tell when the baby is born and if the fontanal is decreased like it should be or popped out from pressure. Let me expain...hydrocephalus is a build up of fluid that prevents the brain to expanding and developing. So if you suck the fluid off the brain the brain can then expand like a sponge. Vaco Hydrocephalus is when the brain is not forming correctly so therefore fluid fills in the spots. He did say he saw a prior brain bleed but his exact words were "The brain at that age is fryable" Yes he said fryable..... "It is so delicate that sometimes these blood vessels just burst, and cause a bleed it happens all the time and people don't even know it. The brain has a way of healing itself." He then went on to say that the bleed probably caused the other issue. He is concerned about the cortical thinning just like the other dr's, but again cannot determine the severity. He said that they are right the baby had all his major componets of the brain. He then started explaining about how he isn't concerned about Dandy walker and something else because the "bridge" is between the hemispheres. I said "the corpus collasum". He said "yes and acknowledged I had been researching...he said normally with Dandy walker you see that missing, cysts, fluid, and other issues. Anyway, we asked him what the percentage of children are that has issues like this that he treats. He replied that he treats many many children with these issues. I asked him what his findings were. He said they can range from severe to really no issues. He said there are people walking around with thinning of the cortical lining, hydrocephalus, abscence of some brain parts, etc and they are living a normal life. He also agreed with the neurologist that the cerrebellum will catch up. He said he has children come in that he does mri's on after a bump on the head and by the mri discover they were probably born with severe brain issues. Then he fully expects to walk in and see them in a wheelchair, and not talking yet.... there they are playing in the floor. He said you just never know! I told him I was concerned about Cerebal palsey and he said .... "mmmm that is normally a baby that strokes out during delivery and that's the cause of cerebal palsey". I never knew that! Then the most promising part to me? He goes "I reviewed the mri films and I see grooves starting to form in the brain.". "Wait that is good" I said. "yes it is because if it was a smooth brain I would be telling you that this baby will in fact be severely retarded and never have a normal life". He then went on to agree that the kicking and moving is a very encouraing sign. He said the grooves show brain growth and development. So this is what we decided....we will go back to the re sonogram next Friday. If Jude's brain ventricles have rapidly increased but his head has stayed the same we will sadly terminate because it just means brain tissue is dying. If his ventricles have stayed the same or slightly increased but his head had grown too we will complete this pregnancy to term. We will accept whatever child we get and love him very much! I think he is a fighter! So we need lots of prayers for Friday please.

2 comments:

Gina said...

You definitely have my prayers! Missed you last weekend.

Diane said...

Jenn,
Thanks for sharing with us and keeping us posted on what is going on. I know from other friends how effectively theraputic putting your words on paper or screen can be. It also allows others to be there for you when you most need it. I will keep you in my prayers and have asked all my friends who believe in prayer to pray for you. Mother has always told me that in life we never receive more than we can bear. You and Michael have a great love and a wealth of courage to help you through this!
love, Diane