DYER | At less than 6 months old, already time is not on Seth Petreikis' side.
After his open heart surgery at 2 1/2 weeks old went so well, doctors were talking about letting the boy, born in July, go home just three days after the procedure. However, his parents soon were devastated to learn he was diagnosed with Complete DiGeorge syndrome, a rare and fatal condition that means his body can't fight infections or viruses.
The only way to fix the problem is through a procedure done by only one doctor at only one hospital in the country.
Seth's parents, Becky and Tim Petreikis, of Dyer, quickly learned the procedure isn't covered by their son's Medicaid, and their two appeals to the state's Family and Social Services Administration have been denied. Petreikis will need the shunt in his heart replaced by February, but he can't have the surgery done unless the Complete DiGeorge syndrome is addressed first.
"It's like he's been sentenced to death," Becky Petreikis said.
Marcus Barlow, a spokesman for the state's FSSA, said the procedure, called a thymus transplant, is considered experimental and therefore not covered by the state's Medicaid.
"These cases are rare and the reason why state regulations exist," he 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."
While his family attempts to figure out its next step, including the possibility of filing a petition for judicial review, Seth spends his time in a world of isolation, according to his mother, who said her home now looks like a hospital. He has seven cousins whom he's never met. Aside from his parents and his 3-year-old sister, Julia, anyone who comes into contact with Seth must wear gloves and a mask.
Seth's mother said only about five to 12 children are born each year with Complete DiGeorge syndrome, and Seth is the first in Indiana.
Dr. M. Louise Markert, of Duke Hospital in North Carolina, is the only physician who does thymus transplants. According to her physician bio on dukehealth.org, 60 infants with Complete DiGeorge anomaly have been transplanted and 43 have survived, a 73 percent success rate. The hospital has told the family the procedure could run between $350,000 and $500,000.
Becky Petreikis said about half the children who have been treated by Markert have had the procedure paid for by their state's Medicaid. Others, international patients, had the transplant paid for by their country.
"Different states have different judgments," Barlow said. "Some states are stricter (than Indiana), other states are less strict."
The Petreikis family is hoping Gov. Mitch Daniels will step in on the family's behalf.
Jane Jankowski, Daniels' spokeswoman, said Tuesday the office was just receiving information about the situation and will review it.
If Seth receives the procedure, he could develop a normal immune system by the time he is 3 years old, and doctors believe while he will have shunts in his heart his whole life, his heart condition is fixable, his mother said.
"We're not fighting for a life in a hospital, we're fighting for a normal life," she said.
On Tuesday, the Petreikis family established a bank account, should anyone want to help Seth afford the surgery. But the family, which has never been able to afford regular health insurance from their family's flooring business, understands money is tight for most people.
"It would mean the world to us if parents would realize every moment you have with your child is precious," Tim Petreikis said. "Grab your child and look to the heavens in thanks. Every child, do our family a favor and honor, show gratitude and love to (your) parents."