14-month-old with rare condition waits for new heart at Rady Children's Hospital

When Cristin Ware found out she was having a baby boy, she said it was like a dream come true, but that dream was short-lived after finding out her son would be born with a rare heart condition.

“I know I’m having a son," Ware said. "I can hear his first heartbeat. I cried. It was emotional."

But when Ware was around 16 weeks pregnant, her tears of joy tears turned to sadness.

“I believe it was the second ultrasound where they found something was wrong with his heart,” Ware said.

Cristin learned her son, Aziah, would be born with a very rare heart condition called heterotaxy dextrocardia.

“He has a very rare form of what we call congenital heart disease, or a malformed heart, but on top of not being formed correctly, it’s not functioning correctly,” said Matthew Bock, the medical director of Heart Failure and Transplant Program at Rady Children’s Hospital.

Aziah’s heart is on the right side of his chest, and he only has one ventricle; a normal heart has two.

“It was hard," Ware said. "I didn’t know how much it would be in the days and months coming."

Aziah had his first heart surgery at two weeks old and spent the first five months of his life at Rady's.

“He had to be admitted in August, and that was really hard," Ware said. "I wasn’t ready emotionally."

Now, at 14 months old, Rady Children’s Hospital has been his home away from home.

“Babies tend to wait a lot longer," Bock said. "It’s harder to find hearts for smaller children their size, so they’ll tend to wait six months to a year."

Rady Children’s Hospital currently has 10 kids on its heart-transplant waiting list, including Aziah.

“There are days where we’re hopeful, and then there are days where I’m like; Here we are," Ware said. "We’re at seven months."

While they wait, Ware said, they try to live life too, like throwing Aziah a Mickey Mouse theme birthday party when he turned 1, in December.

“I did get emotional because we didn’t get to bring him home, but it was still such a great day," Ware said. "He had so much love."

Ware said their plans for when Aziah gets to go home include a trip to Disneyland.

“Mickey Mouse will be the first that we meet,” Ware said.

Since 2015, Rady surgeons have performed 57 heart transplants.