It’s a time of joy, adding another child to your family, but that joy didn’t last long for the Elenbaas’s. At one week old, their newborn’s screen came back abnormal. Mike and Amanda’s daughter Jada was diagnosed with complete DiGeorge Syndrome. It is an immune deficiency so rare, only 15 children a year are born with it in United States. Jada was the first child in west Michigan ever to have the complete syndrome.
“This is a prime case of the newborn screening working how it’s supposed to,” said Dr. Nick Hartog. He is a pediatric immunologist for Helen DeVos Children’s Hospital. “In years prior before the screening, this was a baby that probably would have passed away from infection before we found out what was going on.” In 2011 Michigan became one of the first states to screen for severe immune deficiencies which includes DiGeorge Syndrome.
Babies like Jada, born with DiGeorge Syndrome, don’t have a thymus gland, the large butterfly shaped gland just above the heart responsible for creating the immune system. Without any immunity, Jada could die from something as simple as the common cold.
“It really pushed us to do a lot of things we haven’t really done before but we needed for Jada’s care,” said Dr. Hartog. “In addition, there were experimental medications we needed to fight viral infections she was having.” Not even Jada’s mom and dad could enter her room without taking precautions. “You get all gowned up and clean everything down before you go in and then check her out if she’s awake, play with her a little bit.”
A cold virus landed Jada in the hospital for nearly four months and it became clear there was only one way to save her life — a thymus gland transplant.Share