Monday, March 23, 2009

CDH

With CDH being as rare as it is, most of the families I have come across have been online. I've met people in many states and even different countries (or those people who live close and then MOVE to a different country). When we were in the NICU, Leah was the only baby there at the time with CDH. We then learned of Roo and hope to meet Liviana someday. Hopefully later this summer we will get to meet Baby John who was born in Denver last October and lives in Alaska when he visits his grandparents in Iowa.

Online I also "met" another family from Iowa who live on the eastern side of the state. They made the choice before their baby was born to deliver at Children's Hospital of Philadelphia (CHOP) because of their expertise in CDH. They temporarily moved their family of 4 from Iowa to give unborn Ava a shot at life.

Ava is a year younger than Leah and went through re-herniation shortly after Leah did last year. I was able to meet Ava's mom last October on a day when she really wasn't sure if Ava would pull through or not. Ava's recovery was long and eventful, but she is home and doing well. The local paper where Ava lives has done articles on her before and this one was just in the paper yesterday.

It continues to amaze me that those three little letters can do so much (or so little). It seems that everyday I read a new blog or find another family going through what too many have gone through before. Some babies and kids make it through the minefield; others don't. As we found out once you make it through doesn't mean the battle is over. We will keep fighting and spreading the word to others.

5 comments:

Mom on the Run said...

My college roommate's son is going on 10 years old and doing well, but it was a long road. He had a feeding tube for years.

KAS said...

I still think we should pitch a story to the Register or even a woman's magazine like Redbook or Parents.

I've got loads of good ideas. :D Even though it wasn't declared this year, I might pull out my CDH awareness post from last year.

Cristin said...

I'm going to be getting all mushy soon.. Graham is turning 6 in one week... I'll start reliving the whole birth and ICU experience....

Missy said...

I had never heard of CDH until today. Wow. I don't have words.

Bad Mommy said...

You are so calm and level-headed. ;) Great post K.