November 2nd 2009 - February 28th 2010

“No day will ever erase you from the memory of time”

Monday, April 2, 2012

Answers to 2 year old questions

Anomalous left coronary artery from the pulmunary artery or ALCAPA for short. This is what Jackson died of. This is what we have been waiting two years to find out. After meeting with a pediatrician Thursday of last week and signing yet another release form she called today to tell us what she found out. After googling for an hour, reading what I could about it then reading the many posts from mothers whose child was diagnosed early enough and they were able to correct it. I had to shut the computer. I didn't want to read anymore about how now their child is 6 and healthy, my son wasn't one of them.

This is what I found out, 1 in 300,000 babies are born with this. 90% will die within the first year if it is not corrected. This means it is not passed down a family line but that still does not make it any less easier to not worry about my current pregnancy. I still have mixed feelings about this new information. In the back of my mind I have always thought it was something that was always there but never detected, but now I will always wonder if I just got him in sooner, pushed for them to do more would I be the one telling everyone that my son is 6 and healthy.

This baby is still going to get an echocardiogram when she is a month old and I will be on pins and needles until I know FOR SURE that she is ok. I only wish that there was more information about it out there. Why does it take one child to die for the rest to be screened. Why did my son have to be the 1 in 300,000.

1 comment:

  1. I feel like crying now. Knowing he could have survived is harder to deal with than not knowing why he died