Wednesday, April 22, 2009


Why is Blaise short gut? Answer: Because a giant meconium cyst formed in her small bowel while she was in utero, causing the intestine to twist on itself and cut off its own blood supply.

Why did she have a giant cyst in her small bowel? Answer: Who knows?

Someday, Blaise is going to ask us why this all happened. It's an appropriate question for any kid with a chronic condition. Most of the time the answer is genes or environment. In utero meconium cysts are often caused by Cystic Fibrosis, a less-rare-than-you-think genetic disorder. We knew from prenatal screenings that I am not a carrier of the 100 most common CF mutations. We knew that Blaise also did not have any of those mutations and yesterday, we confirmed via a sweat test that Blaise does not have a rarer version of CF. We are Cystic Fibrosis free. Hooray for dodging a second diagnosis!

So now what? No CF. No malrotation. No known infection. Not, from what we can tell, genes. Not, from what we can tell, environment. Just bad luck. Not much of an answer, but there it is.

1 comment:

Mom2Juliana said...

I still don't have an answer to the big question why. Sometimes not knowing what went wrong is worse than knowing. I often blame myself and think was there something I could have done differently to change the outcome. In reality there was nothing that I would change or do differently. Sometimes life chooses who is going to fight the hardest battles. I like to believe that we are given these battles to enpower us to do bigger and better things in life than the average person. I believe that Blaise and Juliana are going to change the world in someway through the great strength they have and will have acquired from the hard times that they will overcome so early in life. You will ask yourself why so many times even when you know there is no answer. So when Juliana grows up and says why me I will tell her because she is special. It takes a special kid and a special family to overcome the battles that we have to face. Please know that Blaise and your family are in my prayers.