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Ingleside baby will be born with half a heart

Hypoplastic Left Heart Syndrome is so rare, according to the Centers for Disease Control, 1,025 babies are born with it each year in the U.S.
Ingleside baby parents
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CORPUS CHRISTI — According to the March of Dimes, 1 in 100 babies is born with a heart defect in the U.S. each year.

One family affected by a critical form of a Congenital Heart Defect is the Rivera’s in Ingleside.

“We ended up finding out we were pregnant in July,” Alexis Rivera said.

They are having a baby boy; a symbol of the love between Alexis and her husband, Juan.

“I was happy,” Juan said. “I was real happy.”

But the couple said during their 20-week scan, doctors found something wrong.

“They couldn’t find the forth chamber of his heart,” Juan said.

“He had half a heart,” Alexis added.

Doctors referred to a term neither parent had heard of.

“They told us it was hypoplastic left heart syndrome — meaning that half his heart was there,” Alexis said. “So he couldn’t live without his heart.”

HLHS is so rare, according to the Centers for Disease Control, 1,025 babies are born with it each year in the U.S.

The cause of the defect is unknown.

“They won’t put him to get a heart transplant until it’s absolutely last resort,” Alexis said. “Even then, it’s a wait.”

The Rivera’s said doctors told them it was too much of a risk for them to put a stint in their baby’s heart while he is in the womb.

“My world came crashing down on me,” Juan said. “I didn’t know why us.”

In mid-February, at 32 weeks pregnant, cardiologists at Driscoll Children’s Hospital told Alexis she has to give birth at a children’s hospital in Houston.

“If things don’t go the exact way they want them to and something didn’t go right, he would have to immediately be taken to Houston for them to have the proper supplies, staff and equipment to take care of him,” Alexis said.

On the first week of March, Alexis will go to Houston. She’ll deliver three weeks later to have her baby, and stay six months while he undergoes three surgeries.

“Once he’s here, he has to have his first surgery his first week of life,” Alexis said.

She will have to leave her husband to work and take of their three children in Ingleside.

Alexis said her children are her strength and it especially hurt when she told one of her sons she would be away for awhile.

“He goes, ‘I don’t want you to be gone. Like I want my baby brother to have a full heart and to come home,'” Alexis said.

“We can only stay positive,” Juan added.

Besides his little heart, the Rivera’s said their son is kicking like crazy.

“It’s Juan's first son so he’s going to be a Junior,” Alexis said. “Juan Rivera Junior.”

They pray they can have his same strength and hope that he’ll be okay.

“I want him to grow up in our family,” Juan said. “To grow up with us, watch him grow, play.”

Since Alexis will be in Houston, even after her maternity leave is up, her coworkers are hosting a BBQ fundraiser at the VFW on Saturday, Feb 25 in Ingleside from 2–6 p.m.

Plates are $12 and will include a pulled pork sandwich, mac-n-cheese, a bag of chips and choice of soda or water.

The money will go toward medical, travel and stay expenses.

Her family has also started a GoFundMe page.

Alexis has contacted the Ronald McDonald House in Houston and is waiting to hear back.