Austin 1-year-old celebrates first birthday after 2 open heart surgeries due to congenital heart defect

AUSTIN, Texas - Being a parent of two children under four years old is a challenge for anyone, but for Jaime and Steve Moreno, it’s uniquely difficult.

After undergoing in-vitro fertilization, the joy of conceiving their second son, Chase, was dampened during a routine ultrasound. 

"The doctor came in and sort of started to explain to us that our child's heart was not growing the way it was supposed to," said Jaime. "Your stomach drops, like a pit in your stomach instantly."

Chase was diagnosed with Hypoplastic Left Heart Syndrome. 

"It’s definitely one of the most severe and serious forms of heart disease that children are born with," said Dr. Eileen Stewart.

Austin 1-year-old celebrates his first birthday and anniversary of his open heart surgery due to congenital heart defect. (Moreno family)

The Morenos were connected with Dr. Stewart, a pediatric and fetal cardiologist at Pediatrix Pediatric and Congenital Cardiology Associates of Texas & Dell Children’s Medical Center. Pediatrix is a separate practice that partners with Dell Children’s. 

Dr. Stewart also runs the hospital’s interstage monitoring program, called IMPACT.

"With this disease, there’s only one good pumping chamber out of the two normal pumping chambers in the heart," said Dr. Stewart. "If kids don't have an intervention immediately after birth for that problem, it's fatal shortly after birth."

Fast-forward to October 2021, and just five days after Chase’s birth, he was headed into his first open-heart surgery. 

First, he had a moment with mom.

"I had actually not gotten to hold him at all except for when I first had him, they placed him on my chest for about 5 seconds, and then they whisked him away," said Jaime. "So one of the nurses was able to make that happen for me before we sent him back [to surgery], which was a very special moment that always makes me emotional."

After they were discharged from the hospital, the Morenos were faced with months of doctor's appointments and learning how to manage his feeding tube and monitor symptoms.

"It was a wild few months," said Jaime. "Just constantly second-guessing things, worrying about everything and just trying to keep our head above water while having a second child at home as well." 

Austin 1-year-old celebrates his first birthday and anniversary of his open heart surgery due to congenital heart defect. (Moreno family)

It was also during the COVID pandemic, which meant they had to be very careful due to Chase being highly immunocompromised.

According to Dr. Stewart, just under 10% of children don't survive that initial period between the first and second surgery. 

In March, Chase underwent a successful, second surgery. 

In October 2022, the Morenos celebrated Chase’s first birthday and the anniversary of that initial surgery. 

"It was an amazing experience hitting that milestone," said Jaime. "It was a sigh of relief that we had come so far."

Jaime said she was thankful to have access to this level of care and medical treatment without having to leave Austin.

"I think that's something that a lot of families don’t have the proximity to an amazing care facility to help your kiddo," she said. 

Dr. Stewart said patients with this heart condition will have to take a blood thinner for the rest of their life. They also will face ongoing evaluations and may have to take other medications. Some patients will need a heart transplant. However, each case is unique.

"Part of why I enjoy taking care of them is they're each unique and different and they each have wonderful potential to be pretty amazing people," said Dr. Stewart. "But they do have a serious heart problem that we have to kind of help take care of as part of their journey."

Chase’s third and, hopefully, final surgery will be in a few years. 

"It's supposedly like a bit of a sweet spot in terms of their experience where you may feel a bit of normalcy for a while," said Jaime. "We’re really trying to just enjoy our life as a family of four for as long as we have this 'normal period."

To learn more about the Texas Center for Pediatric and Congenital Heart Disease at Dell Children’s Medical Center, click here.