GRAND RAPIDS, Mich. -- 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.
"In Jada's case, her immune deficiency is so severe that without that thymus transplant really there's no hope for survival." Also on the team of Jada's doctors was infectious disease specialist Dr. Rosemary Olivero. "After the babies born, the white blood cells that are formed in the thymus go to the rest of the body. So after you are born, your thymus is not terribly important. But for someone like Jada, she missed the critical step of having this while she was in utero."
Dr. Olivero explains the transplant is a live donation from another child, "Which is taken from a routine cardiac surgery from a child that doesn't otherwise need their thymus because it's already done its job. And they take slices of it and implant it into the patient’s body."
But there would be one more hurdle the Elenbaas's would need to overcome before they could save the life of their little girl.
The insurance company.
"As you can imagine this is an incredibly costly procedure and we really had to lobby with her insurance to be able to pay for this transplant so really it was a team effort all the way up to the highest administration at the hospital," said Dr. Olivero.
After being refused by their primary insurance and Medicaid, they got approval from Children's Special Health Care.
"That was a 2 1/2 month battle," says Jada’s dad Michael.
In April, Jada and her parents were flown to Duke University for her thymus gland transplant.
She recently returned home with her parents to an excited little brother.
Dr. Olivero says Jada will spend the next few months at Helen De Vos Children's Hospital, “And then over the course of a few months the white blood cells then become part of her body and she will then have that immune system that she needs."
And while they wait for that to happen, they will once again get caught up in the joy of having a new addition to the family.
“She is so adorable, and chunky and we just can't wait to bring her home and play with her little brother and do normal baby things with her.
"Yeah, hopefully someday."
Jada Elenbaas was the first baby in Michigan to have a thymus transplant. DiGeorge Syndrome is often accompanied by severe heart defects. Fortunately for Jada, she only has a tiny hole in her heart.
She should eventually have a normal immune system live a normal life. She will need to see an endocrinologist her whole life and also monitor her heart condition.
April is National Donate Life Month and that's exactly what one family was able to do for Jada. Live organ donation can save many lives and includes not just the thymus gland but also liver and kidney.
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