Newborn Screening Family Stories: Ryan's Story - Minnesota Dept. of Health

Newborn Screening Family Stories:
Ryan's Story

RyanMy son, Ryan, was born healthy and strong, but quickly got very sleepy. Like my oldest son, he was not a good nurser and fell asleep a lot at the breast. I took advantage of the rest and didn't think twice about it. Around day four, my husband and I knew something wasn't right with Ryan. He wasn't waking up to eat and when he did, he would fall asleep after only a few minutes. We were about to call the doctor on day five, when they called us. They told us Ryan had a positive on his newborn screening and we needed to get him to the hospital now. Neither my husband nor I knew what they were talking about when they said he tested positive for a metabolic disorder called MCADD. How could our healthy baby be that sick, he was just sleepy. Little did we know, that our "healthy" baby wasn't sleeping, he was heading into a coma. Our lives changed forever at that moment.

We rushed to the hospital and doctors instantly hooked him up to an IV with a D10 solution that brought him back to us. I remember keeping track of his feedings. Every hour we tried to get him to eat something and recorded it on the white board in our room. The board had such small numbers on it; a quarter ounce, three quarters ounce and finally an ounce and a half. He was coming back to us and there was no permanent damage.

Newborn screening saved my son's life. We have had two other crises in Ryan's 4 years, but we know what to do now to protect him. He lives a normal and healthy life, thanks to a simple blood test that saved his life.