Baby Girl from Michigan Receives Rare Treatment for Complete DiGeorge Syndrome

Newborn baby Jada Elenbaas had to spend 287 days of her first year of life in the hospital. Jada was born with complete DiGeorge syndrome, also known as 22q11.2 deletion syndrome, an extremely rare condition. While there can be many complications associated with it, one of the most urgent is the fact that, in most cases, the development of the immune system is significantly impeded. To read the original story in WZZM, click here.
In Jada’s case, she was born without a thymus, a gland that is necessary for the immune system to develop normally. Only when the thymus is completely absent is DiGeorge syndrome considered “complete.” To learn more about DiGeorge syndrome, click here.

In order to resolve this issue, Jada received a thymus transplant at Duke University, located in Durham, North Carolina.

The thymus was transplanted into her thighs, and the sites healed normally without any significant problems.

However, while the operation was successful, the benefits of the procedure will not appear overnight. In most cases, the immune system will completely develop within two or three years.

Before she can function normally, Jada will still need constant nursing support, since she will go home with a tracheotomy and will still need to use a home ventilator. The girl’s complication was discovered thanks to extensive genetic testing. Compared to many other states, Michigan has one of the most comprehensive series of medical tests, which allows for the detection of fifty-seven different conditions. DiGeorge syndrome was added to this roster relatively recently in 2011.

Since it is such a rare problem, it is possible that, had Jada been born somewhere else, that the syndrome would not have been detected early enough for necessary preparations to be made for treatment.

Despite the fact that things will still not begin to normalize for Jada any time soon, her loving parents, Michael and Amanda, are eager to take their daughter home with them.

“She hasn’t met any of her family really. She met her grandparents, but cousins…she hasn’t met any of them,” says Amanda. Unfortunately, Jada’s extensive time at the hospital was necessary in order to ensure her survival.

While these operations are typically only needed with complete DiGeorge syndrome, the fact that Jada was able to complete the thymus transplant successfully should give hope to others that are dealing with this issue, particularly for those who are born without a thymus like Jada was.

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