What a big boy!

We had Dominic's 4 month check up appointment today, he is so big! He's in the 80th percentile for height at 26 inches & in the 50th percentile for weight at 14 lbs 15oz~ this is so big for us as Collin & Aidan were only in the 5-10th percentile for weight and 50th for height. He's doing great developmentally as well. This formula with Medium Chain Fat is making him a super baby, he's so strong, which is perfect for what he has, we want him to be as strong as possible!

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.

Latest on Domino

We recently had a visit with Domino's metobolic dr., he's doing very well. They have now allowed me to go 4 hours at night for feeds so really he only needs to eat 1 time during the night since I do not go to bed until 12:30am. We start solids in 2.5 months, that will be the harder part as we will have to caculate every calorie and gram of fat. We'll have to keep a log of everything he eats, kind of hard to do with the chaoticness of life right now, is that a word?? As long as his fat levels are good he'll be allowed around 15% of calories from fat, this can change if I stop breast feeding but I don't want to quit until he's at least a year old. We're pretty happy about this precentage, it originally was going to be alot less than that. He's been great so far, he's a strong boy!

My Story

My name is Dominic Doering, I was born on 4/3/2008. In the first few days of my life like most newborns I was very sleepy. My Mommy & Daddy started noticing that I was barely waking for feedings and were going to let my pediatrician know for my first appointment the very next week. On the 6th day of my life they received a call from the Peditricians office, my newborn screening came back with an abnormal result for a rare genetic disorder Very long-chain acyl-CoA dehydrogenase deficiency or VLCAD and the Doctor's office said they need to contact Children's Hospital right away. They called and explained how I had been so sleepy and not eating well and they said we needed to go to the ER as soon as possible. My parents were very worried. I spent the next 24 hours being a very brave boy getting Iv's, lots of blood drawn for testing. Once I was on the IV I was a different baby, alert bright eyed, Mommy & Daddy had never seen me awake for more than a few minutes from birth. The next morning with Mommy & Daddy up all night trying to sleep on 2 chairs put together, they finally met the special Metobolic Genetisist Doctor that I will now see for a very long time. They confirmed that I do have VLCAD and that I will need to be on a special diet for the rest of my life combined with a MCT Medium chain triglycerides suppliment so that I can have the fat that my body can use since it cannot use Long Chain fat. I am missing the enzyme that breaks down fat using it as energy. So it is very important that I do not go with out food for very long and that I stay well hydrated. It's also important that if I get sick or cannot eat that I go to the hospital for an IV and to be watched until I am all better. I will have to eat low fat food and watch what I eat but Mommy will come up with some good recipes for me so that I can eat yummy things still. Thank you for visiting my page!

More on VLCAD http://ghr.nlm.nih.gov/condition=verylongchainacylcoenzymeadehydrogenasedeficiency