Newborn Screening Family Stories:
Ryker and Kreed's Story
Beautiful baby Ryker was born in Willmar in February 2011. I was in love. We brought him to church at five days old and showed him off – then I checked my phone on our way home to find a voicemail from the on-call pediatrician from Rice Hospital to call him back. I called him and was informed that Ryker's newborn screening was positive for PKU, a metabolic disorder that requires a special diet to avoid mental retardation.
The University of Minnesota would be expecting us first thing the next day – retesting and education was planned at that time. We were devastated. What could this mean? We googled it. We prayed. We cried. We called family and friends, packed up, and headed to the U. Retesting was again positive for PKU, and I spent the next two weeks mourning the loss of my perfect baby.
Then I had a moment of enlightenment – Ryker deserved better. I would make PKU just another thing, not defining him. I read everything I could find on PKU. We altered his diet and began the process of finding medications to allow him to eat more. He responded to these meds and thrived. His first IQ test happened at age one, and he performed at and above his age.
Shortly after, we decided that we would have another baby. Our risk was 25 percent of having another baby with PKU. If that happened, Ryker would have a PKU buddy. In April of 2013, Kreed was born 6 weeks early and went immediately to the NICU. His newborn screening was expedited since we have a family history of PKU. At 2½ days old, his test also came back positive. This time I lamented just a couple of hours.
The more time that passes, the more blessed I feel that my boys were born in 2011 and 2013 – screening FOUND this! Without it, my boys would have irreversible brain damage already and would eventually suffer seizures, behavioral problems, depression, and more. I'm so, so, so thankful for this screening. I took it for granted the first three times. The fourth and final time I said, "Please hurry!" It saved my sons' lives in the sense that they can HAVE healthy, normal lives.
Yep, newborn screening rocks.