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Baby Layla home after surgery to help treat rare heart condition

CAINEVILLE, Wayne County — Like most parents, Dan Thatcher and his wife, Cheralyn, just want to protect their baby girl.

"She's here. She's a miracle," said Dan Thatcher, of Caineville. Layla Marie Thatcher was born April 11, weighing 6 pounds 7 ounces.

The father has been documenting each miraculous minute of their newborn's journey with video taken on his phone. Nothing in this little family is taken for granted.

They lost their first daughter, Lillian, born October of 2014, with hypoplastic left heart syndrome. Her heart was critically underdeveloped. She lived only 71 ½ hours. When Cheralyn Thatcher got pregnant again, a 20-week ultrasound showed— incredibly — their new baby had it, too.

"It was devastating," Dan Thatcher said. "It was like, 'Here we are again, what do we do?'"

They were winners in a lottery no parents wants to be a part of.

"Very, very rare," said Mike Puchalski, cardiologist at Primary Children's Hospital. "It's like getting struck by lightning."

But doctors have made huge strides in treating the disease. What used to be a death sentence is changing. Now 85 percent of babies like Layla make it out of the hospital, according to doctors.

Puchalski pointed to an enlarged electrocardiogram of Layla's heart, noting the two upper chambers, two lower chambers and her smaller left ventricle that isn't useful as a pump like most people's. But early diagnosis and a healthy-sized aorta helped her survive.

Thatcher pulled down his daughter's onesie and touched a vertical scar. "This is her incision area," he said.

At 7 days old, Layla had risky open-heart surgery to repair her heart. "It's amazing what these babies can handle. It's obviously a very scary, emotional time," he said.

There will be many more surgeries to come, but they've made it past the hardest hurdle. "We have nicknamed her our little superhero," he said.

Layla was doing so well after her surgery that after 29 days in the hospital, she and her parents went home on May 10. The doctors and nurses had trained the parents how to care for her.

"The first thing we're going to do when we get home is set up all of her equipment, because we have to play nurse first," he said.

From CPR and monitoring her oxygen saturation, to placing a feeding tube, doctors say they're saving lives by empowering families to better care for their infants at home.

Because when you're a dad, you just want to protect your baby girl. "It's just a joy that she's still here. She's a living gift from God," Dan Thatcher said.

Safely at home, Layla looks at the camera on her dad's phone and coos. "Little Miss Layla in her lady bug outfit," he said.

The five-year survival rate for children with this disease is 60 percent to 65 percent. But advances in surgery and implantable devices means kids like Layla could live into their 30s.

Email: hsimonsen@deseretnews.com