Waiting for a Donor Heart: Baby Azha’s Story at Oklahoma Children’s
- Category: Children
- Posted On:
When Dre’Onna and Skylar Ambrose of Norman learned they were expecting their second child in October 2024, they were excited to grow their family. Their son Xander, 8, would soon have a sibling. But by January 2025, when Dre’Onna was four months pregnant, something felt wrong.
“I was extra sick and I had spotting,” Dre’Onna said. “I didn’t do this with my son. It felt strange, like my body was trying to reject the baby.”
Her physician at Norman Regional Health System referred her for an in-depth ultrasound. In February 2025, the diagnosis was confirmed: their baby girl had hypoplastic left heart syndrome (HLHS), a rare and serious heart problem in which the heart can’t pump blood to the body the way it should. HLHS affects approximately 1 in 3,000 to 5,000 babies.
“We were devastated,” Dre’Onna said. “They said, ‘Let’s give you guys time.’ So, they waited till March to let the baby grow, just to make sure what they were seeing was correct.”
With the diagnosis unchanged, the family chose to transfer care to Oklahoma Children’s OU Health, where pediatric heart specialists could provide advanced cardiac care.
What Is Hypoplastic Left Heart Syndrome?
HLHS is a heart defect that prevents normal blood flow through the heart. In this condition, the left side of the heart doesn't develop fully, so it can't pump blood well. Instead, the right side of the heart must pump blood to both the lungs and the rest of the body. This means the body may not get the oxygen-rich blood it needs.
About 929 babies are born with HLHS each year in the United States. Most require medical care or surgery shortly after birth.
Treatment typically involves a series of three surgeries:
- Norwood procedure (shortly after birth): creates a pathway for blood flow, allowing the right side of the heart to pump blood to the body.
- Glenn procedure (4–6 months): reduces the heart’s workload by routing blood directly to the lungs.
- Fontan procedure (ages 2–4): completes rerouting of blood flow so the single functioning ventricle pumps blood only to the body.
A Difficult Pregnancy
From February through the remainder of her pregnancy, Dre’Onna had weekly appointments at Oklahoma Children’s. Despite the heart condition, Azha continued to grow normally in utero.
Physically, the pregnancy was difficult.
“I’m a financial advisor, and I have to meet with lots of clients,” Dre’Onna said. “There were times where I was meeting with clients and feeling like I was going to pass out. I passed out at one of my meetings and they had to call my husband.”
Azha’s Arrival
On Wednesday, June 11, 2025, doctors induced labor one week early to allow for a controlled delivery. After 16 hours of labor, Azha’s heart rate dropped repeatedly, and Dre’Onna required an emergency cesarean section.
“When Azha came out, I got to kiss her once,” Dre’Onna said. “Then she immediately went down to the NICU.”
After birth, Azha was given medicine to keep open a blood vessel called the patent ductus arteriosus (PDA). The PDA usually closes after birth, but in newborns with HLHS, it must stay open so blood can keep flowing.
“They needed to keep it open like she was in the womb,” Skylar said. “It was keeping her alive.”
Early Surgeries and Complications
Azha spent two days in the neonatal intensive care unit (NICU) before transferring to the cardiac intensive care unit (CICU). Over the next two months, she had surgery to place small bands around the arteries that carry blood to the lungs. This helped control blood flow and supported the heart in preparation for future surgery.
“We banded her pulmonary arteries to decrease her lung blood flow and improve her heart function,” said pediatric cardiothoracic surgeon Dr. Harold Burkhart, M.D., professor of surgery and chief of Cardiac, Thoracic and Vascular Surgery at the University of Oklahoma College of Medicine.
Soon after, Azha developed a serious complication. Her atrioventricular (AV) valve began leaking, a condition known as atrioventricular valve regurgitation.
“It’s just bad luck,” Dr. Burkhart said. “She was born that way, and there’s something wrong with the valve. Once it starts leaking a little, the heart gets stretched out more, which makes it leak even more.”
The care team continued close monitoring.
Precious Months at Home
On Aug. 11, 2025, Azha was stable enough to go home.
“She was a normal, happy baby,” Dre’Onna said. “You wouldn’t have known she had this heart issue because she was a regular baby.”
Xander embraced his role as big brother, and the family treasured their time together at home.
The Need for a Heart Transplant
In September, the family learned Azha would need a heart transplant. Her heart valve problem had grown worse, so the three-surgery plan was no longer an option.
“As a parent, you hope for the best,” Skylar said. “But once we found out Azha wasn’t eligible for those surgeries, it hit like some bricks.”
“Azha had severe regurgitation of the one-way valve between the atria and the ventricle,” said pediatric cardiologist Dr. R. Erik Edens, M.D., Ph.D., medical director of Heart Failure and Transplant at Oklahoma Children's OU Health Presbyterian Health Foundation Heart Center.
“This caused extremely inefficient pumping.”
Infant heart transplants are rare, with long wait times because there are so few donor hearts available.
Back to the Hospital and the Berlin Heart
On Tuesday, Dec. 3, 2025, Azha returned to Oklahoma Children’s as her heart failure worsened.
“She was actually doing quite badly in heart failure,” Dr. Burkhart said. “She proved that she wasn’t going to make it long enough to get a heart if we didn’t intervene.”
On Dec. 11, the team placed Azha on a Berlin Heart, a mechanical pump that helps the heart pump blood.
“The Berlin Heart is a ventricular assist device,” Dr. Edens said. “It is used to help support output from the heart when the heart is not pumping adequately to support life.”
The device pumps blood outside the body, giving Azha's heart a chance to rest while she waits for a transplant.
“If we did not do something, she would die while waiting for a heart transplant,” Dr. Burkhart said. “This gave her a chance at survival.”
Life on the Berlin Heart
Azha remains hospitalized while waiting for a donor heart. The device requires continuous monitoring, frequent dressing changes, and close multidisciplinary care.
Initially, Azha needed a ventilator to help her breathe. As her heart function stabilized, she was successfully weaned off.
On Jan. 7, 2026, Dre’Onna and Skylar held their daughter for the first time in a month.
“We actually get to hold her,” Dre’Onna said. “And we get to hear her cries.”
Living Day by Day
Now 9 months old, Azha waits.
Her parents work remotely from her hospital room and stay at the Ronald McDonald House. They balance hospital life with maintaining routine for Xander.
“We try to keep his life as normal as possible,” Skylar said.
For infants Azha’s age, waiting for a donor heart can take nearly a year. In 2025, fewer than 100 donor hearts were available nationwide for babies under age 1.
Finding Strength and Support
The family has found support through Oklahoma Children’s heart transplant support meetings.
“We’re all wanting our kids to be better,” Dre’Onna said. “Just hearing from those parents is so inspiring.”
Exceptional Care Close to Home
Throughout their journey, the Ambroses say the coordinated care at Oklahoma Children’s has made a difference.
“The doctors here and the staff in general have been amazing,” Dre’Onna said.
Skylar added, “If something came up — a fever, a rash — everyone was right there, working as a team.”
Waiting for the Call
As they wait, the family continues to advocate for organ donation.
They wait now for the call that will change everything.
“We know she will be normal again,” Dre’Onna said.
Oklahoma Children's OU Health provides comprehensive pediatric cardiac care, including heart transplant services, for children across Oklahoma. The hospital is home to the state's only Level I Pediatric Trauma Center and works closely with the University of Oklahoma College of Medicine to provide advanced care for the most complex pediatric heart conditions. To learn more about pediatric cardiac services or to become an organ donor, visit OUHealth.com or call (405) 271-KIDS (5437).
