Medicaid Denied: Parents Need Help to Save Baby's Life

Procedure to save infant tops $350,000

By Jenel Nels and Anthony Ponce
|  Wednesday, Dec 8, 2010  |  Updated 10:22 PM CDT
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Insurance won't pay for expensive care, deeming it experimental.

Insurance won't pay for expensive care, deeming it experimental.

He's only a few months old, but  already Seth Petreikis is in a fight for his life.

When the Dyer, Ind., baby was 2 1/2 weeks old, he underwent open heart surgery. The surgery went well, but doctors discovered another problem shortly afterward.  Petreikis was diagnosed with Complete DiGeorge syndrome, a rare and fatal condition which prevents the body from fighting infections or viruses.

Because he has no immune system, anyone who visits the family apartment or touches the boy has to wear a facemask, rubber gloves and a sterile gown.

"Life is precious right now.  We probably have 2 years with Seth," said his father, Tim Petreikis.

To give the boy a chance at life, he needs a thymus transplant, and a doctor at Duke Hospital in North Carolina is the only physician in the nation who performs the procedure.  

The hospital told the Petreikis family the procedure could cost between $350,000 and $500,000.

The family's final appeal to have the procedure covered by Indiana Medicaid/FSSA was denied over the weekend because they deem the procedure to be experimental.  Indeed, just 60 infants with Complete DiGeorge anomaly have undergone the transplant and 43 of them survived, according to research records by Dr. M. Louise Markert of Duke Hospital.

"The doctor at Duke has told us there's only a 20 percent chance that he'll live til he's one and he won't make it to his second birthday," said Seth Petreikis' mother, Becky.

The family has established a benefit fund to seek donations. Anyone interested in helping can submit contributions to the Seth Benjamin fund at any Citizen's Financial Bank, account No. 2847677.  Donations can also be made through the family's website, SethBenjamin.org.

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