After 287 days in the hospital, Jada Elenbaas is going home.
It has been quite the journey for Jada and her parents, Michael and Amanda. She was born with complete DiGeorge Syndrome. The immune deficiency is so rare, only 15 children are born with it in the United States every year.
The only cure? A thymus gland transplant.
The experimental surgery had to be done at Duke University in North Carolina -- and it was a success.
"She got her new thymus transplanted into her thighs and those sites healed up beautifully," said Dr. Rosemary Olivero, a pediatric infectious disease specialist.
The thymus gland is responsible for the development of the immune system and Jada was born without one. The transplant is fixing that, but it takes time.
"So it's actually been a rather long process of waiting now, waiting for her immune system to kick in," said Olivero.
Jada has spent the last three months at Helen DeVos Children's Hospital. Dr. Olivero says she grows stronger every day, "Once her immune system comes in it's gonna stay there."
While it's not fully developed yet, it is strong enough for her to finally go home to her new room.
"It's navy blue and hot pink [with] a lot of inspirational signs and a big sign that says 'Jada' and very pink," said Jada's mom, Amanda. There are also, "medical supplies, organizational bins, gloves masks, hand sanitizer," at arms reach.
Dr. Olivero says this won't be a typical homecoming for Jada, that “she will go home with pretty much around the clock nursing support because she will go home with a tracheotomy in place and a home ventilator."
Mom and Dad say that doesn't matter, they just want to have their little girl home. "She hasn't met any of her family really. She met her grandparents, but cousins -- she hasn't met any of them.
"It will be great to bring them to a family party or Christmas or that kind of thing."
Jada should have a complete immune system by the time she's 2 or 3 years old -- and while she will still need to be monitored by doctors, she should be able to live a completely normal life.
Jada's DiGeorge Syndrome was found thanks to genetic testing. Michigan has one the most complete series of tests with screens for nearly 57 conditions. DiGeorge Syndrome was just added in 2011.
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