Georgia natives Zach and Sarah Ellen Beavers reached acceptance during the third trimester that they would cherish the time they had with their first child, Anna Claire Beavers.
“We just had to trust that the Lord was going to make a way, whatever that may have looked like,” Sarah Ellen Beavers said. “Whether we had three minutes with her, 30 days with her, we just came to a place of trusting that whatever time we had with her was what he desired for us.”
The parents-to-be found out in December 2024 that Anna Claire would be born with hypoplastic left heart syndrome, a rare condition that causes the left side of the heart to be too small and unable to pump blood properly.
In March, they learned she also would be born with Turner syndrome, which only affects females and causes one of the X chromosomes to be missing or partially missing.
Mortality is high for infants with both conditions who undergo heart surgery: 80%-90% don’t survive following the surgery, according to a 2023 study from the National Institutes of Health. That rate is enough to dissuade most hospitals from performing the surgery, without which a child with both syndromes will inevitably die during early infancy.
Still, the Beavers were persistent. Before their daughter was born, they reached out to four hospitals outside of Georgia to see if anyone would perform Anna Claire’s surgery.
“Of those four, we had a no; we had a yes with a clause; a yes that ended up turning into a no; and then another no. But that no said, ‘No, but call Cook Children’s,’” Sarah Ellen Beavers recalled.
At Cook Children’s Health Care System, babies with both conditions who undergo surgeries have a survival rate of 71%.
To make sure their daughter received proper care, the Beavers relocated to Fort Worth for five months. After Anna Claire was born on April 3, she immediately underwent surgery. She then had a second operation in late July.
The family was able to go home in August.
The hospital’s success is a badge of honor, fetal cardiologist Dr. J. Kevin Wilkes said.
“One of the hardest things for me as a fetal cardiologist is to tell a family that there is no hope,” Wilkes said. “So it makes me feel very prideful that I can tell families that there is hope for them.”
The left side of the heart is responsible for pumping blood to the body, while the right side pumps blood through the lungs to receive oxygen.
In the first surgery to treat the syndrome, doctors transfer the responsibility of the left side of the heart to the right side and place a shunt to direct deoxygenated blood to the lungs.
“It is an incredible operation. Because of the complexity, it has a very high mortality (than) some of the other surgeries that our surgeons perform,” Wilkes said.
Small but hopeful results
Cook Children’s success rate with patients with both conditions is small — only six infants since 2012 underwent the surgery for hypoplastic left heart syndrome before Anna Claire. Four survived without the need for a heart transplant.
Still, the rate was significant enough for the hospital officials to present their findings at a conference in Florida in February.
Wilkes and Anisha Saripalli, a current third-year medical student at UNT Health Fort Worth, presented Cook Children’s results to colleagues.
Saripalli, who helped the hospital collect the data last summer, said another Texas hospital at the conference shared the Cook Children’s work with the Beavers weeks later.
“I am aware that this could just be the outlier,” Saripalli said. “We’re told that you shouldn’t really expect to see the results of your research for a couple years, just to be more realistic. But seeing that impact, face-to-face, it did make me appreciate my research.”
From the Beaverses’ perspective, the fact that Cook Children’s success rate got to them just in time during the third trimester and that Anna Claire is healthy is surreal.
“Outside of the (cardiac intensive care unit), there’s a sign on the wall that says, ‘Miracles happen here,’” Sarah Ellen Beavers said. “We truly believe that Anna Claire is a miracle and that happened here.”
Zach Beavers added that his in-laws called the company that made the sign hanging in the Fort Worth hospital.
“We now have that sign at our house,” he said.
Ismael M. Belkoura is the health reporter for the Fort Worth Report. Contact him at ismael.belkoura@fortworthreport.org.
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