The initial shock

I had written this shortly after we found out about Dominic

We had Dominic on April 3rd 2008. He seemed like a normal newborn for the first 2 days of his life. When we came home I noticed he did not eat very well, he also did not have the fast sucking motion that Aidan and Collin had. He also seemed extra sleepy, barely waking up to eat even.
On April 9th, we received a call from out pediatrician’s office – they said that a result from the newborn screening had come back abnormal, they did not tell me much about it other than we needed to contact Children’s Hospital immediately. Of coarse I was already crying and very concerned over this news. I then contacted Children’s Genetics Department and was put in contact with the Metabolic Geneticist there. The words they were using did not make sense to me, they said he tested abnormally high for VLCAD –


I was told we needed to come in first thing in the morning for additional testing. Also they told me I needed to feed Dominic every 2 hours. They asked how he was doing, I had let them know my concerns for the lethargy/very sleepy and not eating well. With that information they wanted to see us as soon as possible so we needed to get the the emergency room for monitoring and tests. We watched Dominic getting a catheter, getting poked all over because his veins were too tiny to get blood from for all the testing they needed to do. We had a long hard night with no sleep watching our newborn that we thought was healthy and we still even at the hospital had no answers. Finally in the morning the Specialist visited us and explained what he has. We also met with the Dietitian and were told that Dominic would have to eat every 2 hours through out the night for at least the first year of his life. I could no longer fully breast feed and had to now supplement with a special formula every other feeding.


For the first few weeks after we found out our new baby had this disorder we were both so upset and having a hard time dealing with it. We couldn’t believe that here we had had 2 healthy boys together and the whole time we had a 1 in 4 chance of having a child with this disorder. I think I cried almost every time I looked at Dominic for the first few weeks of his life. Jeff & I would talk about how bad we felt for him and that it really makes you look at life when something difficult comes your way. Granted this could have been much worse, this is something that with proper care is manageable and Dominic had a good chance of a healthy long life. I’m so thankful to God that he is okay and doing well.