Tuesday, July 6, 2010

MRI Results-FINALLY! Looking to the future....

Two weeks is a long time to wait for such pertinent information.
Let's hope and pray that I am learning some patience through all of this. I think I'm getting there.

We finally have some answers. Not all of them, as some will be years down the road, but some of them.

One of them being that we can talk of “years down the road”.

After two very long weeks of waiting, we finally had a chance to discuss the MRI results today.

First, the good news.

Sam’s diagnosis is not lethal!

We get to plan on having a baby that will live!

I think I shed more tears out of relief over that information than over anything else this morning.

There is no evidence of bleeding in his brain, or any other events that may have caused further damage than what he is already dealing with. This is also good!

Now, the nitty gritty details.

Samuel does have a form of holoprosencephaly (HPE). Thankfully he sits on the mild-moderate side of the spectrum of an HPE diagnosis. There are a few different degrees of HPE; ranging from lethal to there are problems, but we don’t know how severe they will be. Sam sits down on the problems end of things. When a brain forms in the very early weeks of pregnancy, it divides into the two hemispheres with a dividing line in the middle. Sam’s division does not span the length of the brain the way it should, so there is indeed merging between the lobes of his brain. We know that he will have mental and physical delays, but as has been the case through this entire process, we don’t know how severe they will be, we just have to wait and see.

The ventricles in his brain-which is what we have been watching closely with the hydrocephalus-have merged. This is not a good thing, they are supposed to stay separate. We do not know what effect this will have on his brain and his development. The one piece of good news in this factor is that since they have blown into each other, the pressure against his brain is not as severe. There was more pressure on his brain tissue as each of the vents was expanding on a continual basis. The last time we were able to get good measurements on his vents one was measuring roughly 30mm and the other about 20mm. They appear to be the equivalent of roughly 20mm each at this point, so obviously the amount of room they are taking up (if they were still separate) is less than a month ago when they were each expanding at their own rate. Hopefully with less of that continual compression he was getting, there may end up to be a little less damage to the capabilities of that brain tissue.

Sam also has what is called Agenesis of the Corpus Callosum. This essentially means that the fibers that span from the right to the left side of the brain so that the hemispheres can communicate are not there. In and of itself, this is interestingly not necessarily a huge deal. There are actually adults that function normally and find out for whatever reason (typically an accident or injury that requires a head scan) that they have ACC, but have functioned normally through their lives. So alone it’s not necessarily a big deal. Obviously this is not the single diagnosis here, but part of a number of things, so again we wait to see how this plays into everything.

He is also missing a part of his brain called the cavum septum pellucidum. This can bring with it a number of problems as well.

So while we are looking at some likely significant mental and physical challenges for our little guy over the coming years, we can say years!! The perinatologist went so far as to say “maybe 20-30 years?” when Aaron asked what she meant by years (if she meant 3 or 4yrs or 10yrs). The sense of relief is tremendous!

Today we focus not on the dozens of specialists we will need in the near future, or the challenges that this child and our family may face, but the fact that we can plan for our baby to arrive and spend some time-hopefully a fair amount of time-with our family.

The other good news from today is that Sam’s head has just barely increased in size (both BPD and Circumference) over the past two weeks. Dr B is optimistic about delivery still, especially if his head doesn’t have a big jump soon. There is still the chance that there could be a big jump in head size, in which case if we see that at the next appointment in 2 weeks we will start steroids for baby’s lungs and plan the delivery within a week or two of that point (putting me at 35 or 36 weeks). Otherwise, we might just make it to August after all!!

Also, I got to see my adorable little baby's chubby face today. As soon as I get it online I will share it. The boy has got some cheeks! And the same nose as a couple of his siblings too.....

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