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Baby Seth dies; he never got potentially life-saving organ transplant

From Mia A. Aquino, CNN
Baby Seth Petreikis in his hospital bed.
Baby Seth Petreikis in his hospital bed.
  • Baby Seth went to a North Carolina hospital in hope of an organ transplant
  • He became the focus of media reports when a Medicaid provider denied coverage
  • Coverage was granted, but another complication prevented the surgery
  • "He was such a little fighter," his mother says

(CNN) -- A 10-month-old Indiana boy born with a fatal genetic disorder died Sunday at a North Carolina hospital where he had gone in hope of receiving a potentially life-saving organ transplant, his parents said in a Facebook post.

Seth Petreikis, after having open heart surgery when he was about 2 1/2 weeks old, was diagnosed with complete DiGeorge syndrome, a rare disease that left him with no immune system.

However, it was not Seth's heart or the complete DiGeorge syndrome that ultimately caused his death, his mother said in the same Facebook post. Baby Seth died from complications resulting from a problem with his airway.

Seth went to Duke University Hospital to receive a thymus transplant. The procedure was pioneered by Duke's Dr. M. Louise Markert, the only doctor at the only hospital in the United States that performs the surgery.

Seth's condition resulted from the absence of a thymus gland, which produces T cells, a type of white blood cell that helps protect the body from infection, Markert told HLN in a television interview in December.

Without T cells, Seth had no way to fight infections, Markert explained.

Sixty infants with complete DiGeorge syndrome have received transplants and 43, or 72%, survived, according to Duke University Hospital.

But Seth's family hit a roadblock when coverage for the transplant was denied by MDwise, an Indiana Medicaid administrator that was their insurer, because the surgery was considered experimental.

The cost of the surgery was an estimated $500,000, which Seth's parents told CNN they could not afford.

Seth's plight became the focus of many media reports.

MDwise eventually reversed its decision and agreed to cover the transplant.

"Based on Seth's unique and compelling story, we believe making a compassionate allowance in this case is appropriate," said Caroline Carney Doebbeling, MDwise chief medical officer, in a press release issued after the reversal of its decision.

But last week, doctors determined Seth had a severe tracheomalacia, meaning his airway was so floppy it could not sustain itself. Seth would have needed to be on ventilation for years, and he would not have been eligible for the thymus transplant during that time because of the ventilation.

It would have been impossible for Seth to stay free of infections and viruses for those years, Seth's mother, Becky Petreikis, explained on the Facebook page. "Pray for Seth Petreikis."

"He was such a little fighter. It was an honor to be his mom for 10 months," she wrote.

Seth's funeral will be Saturday morning in Crown Point, Indiana.