CHICAGO
12/08/2010 05:47 pm ET | Updated May 25, 2011

Seth Petreikis, Baby With Complete DiGeorge Syndrome, Denied Medicaid Coverage For Life-Saving Procedure

Seth Petreikis is a six-month-old baby trying to dodge a death sentence.

He was born in Dyer, Indiana earlier this year with a rare and usually fatal condition called complete DiGeorge syndrome. A genetic malfunction on his 22nd chromosome kept him from developing a thymus, an organ that helps develop white blood cells, and led him to have serious heart defects.

As such, he's susceptible to overwhelming infections, and the heart surgery he'll need in February will be impossible without making him dangerously vulnerable to such infection. "It's like he's been sentenced to death," his mother, Becky Petreikis, told the Northwest Indiana Times.

Indeed, babies born with complete DiGeorge are unlikely to see their first birthday, and almost never survive past the age of two.

The one possibility of commuting that sentence: a radical transplant procedure pioneered by a specialist at Duke Hospital in Durham, NC.

But unless something changes, and soon, his family won't be able to pay for the procedure in time to save Seth's life. Despite his parents' pleas and appeals, Indiana Medicaid won't cover the operation, and neither will the state's Family Social Services Administration (FSSA).

Dr. M. Louise Markert's novel procedure involves transplanting a healthy thymus into the newborn's body, which then starts producing T cells on its own to help fight infection.

"The thymus is like a schoolhouse" that teaches cells from the bone marrow to fight infection, Dr. Markert told HuffPost Chicago. "This child was born with no schoolhouse. So the idea is, we put one in. Just as if you have a ballpark, the players will come, if you have a schoolhouse, the students will come."

Indeed, even when the transplanted thymus was implanted in the patient's leg (it's normally on top of the heart), blood cells still migrated to the new organ, and within a few months, the affected baby was miraculously producing its own T cells.

Of the sixty children who have received the transplant, only two did not survive, and they suffered from other unrelated complications. The rest have gone on to live healthy, normal lives. One of Dr. Markert's patients is a perfectly healthy 17-year-old senior in high school.

But her astonishingly successful procedure comes with two caveats: total costs can run up to $500,000, and it's considered an "experimental" treatment.

The first fact means that the Petreikises certainly can't afford it on their own, and the second fact means that Indiana's Medicaid won't cover it.

Seth's parents have made two appeals to the state's FSSA, both of which have been denied. From the Times:

"These cases are rare and the reason why state regulations exist," [Indiana FSSA spokesman Marcus Barlow] said. "We don't want them reviewed on a case-by-case basis. ... There's quite a bit of due process based on very specific rules."

From Dr. Markert's point of view, Indiana is being unusually intransigent. Of her 60 transplants, many of them have been Medicaid patients. At first, she said, all states' Medicaid programs say the same thing: they don't cover experimental procedures.

"But then they look at the data, they think, do you want a live baby or a dead baby -- and I have great data," she said. Only rarely have Medicaid programs failed to come around to covering the operation.

Meanwhile, the paper reports that Seth's parents are exploring other options, including petitioning Governor Mitch Daniels to intercede and filing for a judicial review.

And NBC Chicago adds that the family has also set up a fund to raise money for the procedure. Contributions can be made at any Citizen's Bank to the Seth B. Petreikis Fund, account number 2847677. Also, the family has set up a fundraising website here, which allows donations through PayPal.