Dyer mother talks about son's heart defect to comfort others dealing with fears

DYER | The gravestone for young Seth Petreikis has a special symbol on it — a heart with a Band-Aid.

His mother, Becky Petreikis, hopes the symbol for congenital heart defects may help comfort another grieving mother as she walks through the cemetery, letting the woman know she's not alone.

Many Northwest Indiana residents may remember Seth Petreikis as the Dyer infant who died in May after his family fought Medicaid to fund a thymus transplant for him to correct the chromosomal disorder DiGeorge Syndrome. But Seth was first a heart baby.

Seth's short life was punctuated by diagnoses. The first was at 22 weeks when doctors discovered he had a congenital heart defect known as tetralogy of fallot. The Petreikis' daughter, Julia, now 4, had been born with a small hole in her heart, which closed by itself.

Offhandedly, Becky Petreikis mentioned the hole to her physician, which led to a screening to see if Seth also had a heart defect.

"It was a shock," she said.

Becky Petreikis said the cardiologist assured her Seth's heart had formed extremely early in the pregnancy and the defect was not her fault.

"It took the guilt off me that it wasn't anything I did. It can happen to anybody," she said.

The American Heart Association says the presumed cause of a congenital heart defect is genetic, but it can happen to anyone. About nine out of every 1,000 babies have a congenital heart disorder, although a mother having an older child with a heart problem indicates a higher risk.

Feb. 7 to 14 marks Congenital Heart Disease Awareness Week, sponsored by the Congenital Heart Information Network.

Seth had about five fetal echos done before he was born and a shunt put in his heart at 2 1/2 weeks old. The heart defect is what alerted physicians to Seth's DiGeorge Syndrome, Becky Petreikis said.

She said she found support groups online of others with children with heart defects, many of whom she now considers lifelong friends.

The American Heart Association said most congenital heart defects are fixable, as long as they're caught early enough. That's the reason behind Cora's Law, which went into effect Jan. 1 in Indiana and is named for an infant who died from an undetected heart defect. The law says every baby in the state will receive a pulse oximetry screening, which can detect low oxygen levels in the blood. The screening won't detect every heart defect but can help red-flag many, saving more children's lives, Becky Petreikis said.

She said the months since Seth's death have been hard, but she, her husband, Tim, and Julia have been coping, finding some comfort in an art therapy group in which Becky has bonded with other moms who've lost their children.

"We're doing all right," she said. "It's a process."

Although Seth had a congenital heart defect, he didn't die from that condition, a fact Becky hopes is helpful to other mothers whose children have been diagnosed with a heart defect.

"(If your child is diagnosed), don't freak out right away," she said. "There is a lot of hope for heart kids."