Our son, Dominic, was born on April 3rd, 2008. He was born a screaming but healthy boy at 7 pounds 3oz and good Apgar scores. I had fairly normal pregnancy with one scare of preterm labor at 31 weeks, I took it easy and he stayed in until he was full term. The same day he was born the hospital at one point said he had low blood sugar, but it did rise after feeding him and stayed up. After our 2 day hospital stay we were excited to go home and show his 3 older brothers our tiny new addition to our family.
About 4 days after arriving home I realized Dominic was not eating very well and was very sleepy, I knew having previous children that they do sleep a lot those first few weeks, but he was barely waking to eat or latching on then falling right back asleep before he had a good feed. My husband and I decided we’d let our Pediatrician know at our next visit coming up, a few hours later that same day we received the call, a call we would never forget. The hospital said that our newborn screening came back positive for VLCADD and that as high as his fat levels were it was a definite, we were told to not Google this disorder but to come straight to Children’s Hospital where he would be admitted and we’d meet our Geneticist and Dietitian for a treatment plan. It was a nightmare not knowing yet what VLCADD was, knowing our child had it and that it was very serious, we did not know if he’d have a normal life, if he’d even live long. As we arrived we were put right through a very busy ER and he was immediately cathetered, hooked up to an IV through his tiny head since his veins were so little. He was also put on a hearth monitor. We got put into a room and had 2 chairs where we tried to sleep but could not, watching our baby and not knowing what our future would bring.
The next morning we were met by our new Doctor, a Geneticist, that would be treating our child, and a dietitian. We learned about what he had, I was to immediately decrease breastfeeding to only 3 times in 24 hour period and supplemented with a special medium chain formula. We learned that he’d have to be fed frequently and never fast, so for the next few months he’d have to eat every 2 hours around the clock. And he would have to be on a very strict low fat diet for life. Any time he would ever get sick where he could not keep food down or could not eat he would have to be hospitalized and on a special D10 IV to prevent any serious complications. And his heart would have to be closely checked a few times a year to be sure that no damage had occurred.
We were discharged with a plan on how to care for him, but we came home heart broken and scared for him. We barely slept for the next few months with the constant feedings and uncertainty if he was eating enough. We also looked up as much information on this to become knowledgeable on how to care for our special child. It was a very stressful first year.
We’ve had some hospitalizations over the next few years and continue to in times of illnesses, hospitalizations are very hard on our entire family. One year he was sick on Christmas Eve so we ended up in the hospital over Christmas. Something we hope will not happen again!
Today Dominic is a healthy, happy 5 year old boy, he is amazing and knows his diet well. Though we’ve had times we’ve found him in a corner eating chocolate and then we worry until his next echocardiogram.
We cannot imagine our life with out him, he is our light. We thank God every day for the newborn screening that only became available to screen for VLCADD only 2 years prior to his birth. We know with out it that his life would have been dramatically different, or even that he may not have made it. We feel much stronger today knowing how to care for our boy and that he will live a long healthy life.
Written By: De-De Doering, Mom to Dominic
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