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Support group helps families cope with children's rare heart defect

March 22, 2013 12:00:00 AM PDT
Out of 10,000 live births, two to three newborns end up with a heart defect that used to be lethal 100 percent of the time. But now parents are learning it doesn't have to be that way.

Getting word and support to these families is the mission that started with a group of local moms called Sisters by Heart.

Three-year-old Bodie Bennett is used to being in precarious positions. Before he was born, an ultrasound revealed he only had half a heart.

"He had his first open-heart surgery at 5 days old," said Bodie's mother, Amy Bennett.

The major chamber of Bodie's heart did not form. It's very rare. Amy felt scared and alone until she met Sara Hale. Sara's son Townsend also had hypoplastic left heart syndrome (HLHS).

"We met before Bodie was even born," said Sara.

Seeing Townsend gave Amy incredible hope.

"It was the first child I met in real life with Bodie's condition and he was doing amazing," said Amy.

Cardiothoracic surgeon Dr. Vaughn Starnes operated on both Bodie and Townsend.

It takes three surgeries for doctors to restructure and rewire a child's existing heart muscle. Before this, HLHS meant certain death.

Dr. Starnes' first patient is now over 20 years old.

"We've gotten the survival rate over 93, 94 percent here in this institution," said Starnes.

Amy and Sara bonded with others moms and realized these families require unique support and information.

For instance, infants recovering from open-heart surgery will have an easier time in the hospital with side-snap "onesies" and legwarmers. The moms created care packages. Soon the non-profit group Sisters by Heart was born.

"Within three days we had an entire care package of 10 items, we had a logo, we had a website, we had a name and it just took off," said Amy.

Four hundred care packages later, the group's support network has gone nationwide.

Amy and Sara still deliver care packages at Children's Hospital Los Angeles.

"I would never, ever think that something like this could pull together so many amazing people and do something for others when they're going through, really, the worst time in their lives," said Sara.

"You can choose either wallow in it or find a way to give back and make it better, and I think we've done that," said Amy.


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