“There is a very special, unspoken bond between grieving mothers,” Jenn Hinkle says of her friendship with Becky Ortyl. Hinkle and Ortyl are the respective founders of the Ollie Hinkle and Mighty Oakes heart foundations. Both had sons who died of a congenital heart defect (CHD) before age 2. In the United States, 1 in 100 babies is born with such a defect. Of the 40,000 CHD babies born each year, thousands do not reach their first birthday. Ollie Hinkle underwent his first open-heart surgery at 8 weeks, his second at 8 months. Such operations are only treatments; there is no cure.
Hinkle says she and husband Mark have devoted the three years since their son’s death to making a difference in the heart community. In addition to directing more than $150,000 to the Children’s Heart Foundation (the country’s leading organization committed solely to funding CHD research), the Hinkles set up the Ollie Hinkle Heart Foundation (OHHF), which since its inception in 2015 has donated $300,000 to pediatric heart research and the compassionate care for heart families.
The Mighty Oakes Heart Foundation—established in 2011 by Becky and husband Greg in memory of their son Oakes—is a recipient of some of those funds. Oakes’ defect was discovered in utero. He had the first of three open heart surgeries at 6 weeks and a double lung transplant at 3 months. He was 15 months old when he died. For all but 12 days of those months, Oakes was in the ICU at St. Louis Children’s Hospital. Ortyl says the foundation was born of an awareness of other families’ suffering. “We had an amazing support system—family and friends to bring us meals and stock our fridge—but so many people do not,” she says. Some, she adds, barely have enough gas money to get them to and from the hospital each day. “If your child is in the ICU, the last thing you should have to worry about is gas,” she says.
Mighty Oakes supports heart families by paying mortgages, travel and food expenses, and other bills. “Anything to make the journey easier,” says Ortyl. In 2015, the foundation helped 53 local families. Since 2011, it has raised $750,000. Last month, the Hinkle and Ortyl families opened Olive + Oak, a restaurant in Webster Groves named for their boys. Hinkle says a portion of revenue will be allocated for CHD charities. “Congenital heart defects are the No. 1 birth defect in the world,” Ortyl says. “And one of the most underfunded.”
Shelley Perulfi, director of cardiac and vascular services at St. Louis Children’s Hospital and Washington University School of Medicine’s Heart Center, says a CHD occurs when a baby’s heart does not develop normally during early pregnancy. Different defects cause different problems, like too much or too little blood passing through the lungs, or not enough blood traveling from the heart to the body. Sometimes, the problems are solved with surgery, but sometimes a heart transplant is needed. Last year, according to Perulfi, the Heart Center carried out 312 pediatric open heart surgeries and 15 heart transplants.