Diagnosing ALCAPA Early: Mayleigh’s Path to Recovery

When Mayleigh Fleeson was 2 months old, she started having breathing problems and was often sick with colds and ear infections. During a visit to the emergency room, a chest X-ray showed her heart looked bigger than normal. The doctors, however, thought this was because of how she was positioned during the X-ray and didn’t look into it further. They treated her for a cold and pneumonia and sent her home.

At 9 months old, Mayleigh was having trouble breathing. An X-ray showed her heart had grown even larger compared to the earlier one. Mayleigh was given a heart ultrasound, and it was clear something was wrong. The cardiologist gave Caleigh, her mother, the devastating news — Mayleigh was diagnosed with a birth defect in her heart called ALCAPA, short for “anomalous left coronary artery from the pulmonary artery”. She would need surgery to save her life.

A Serious Diagnosis

Because Mayleigh’s heart problem was so severe, she was sent to Oklahoma Children’s Hospital OU Health Heart Center. Here she was under the care of pediatric cardiothoracic surgeon Dr. Harold Burkhart, M.D., professor of surgery and chief of the Division of Cardiac, Thoracic and Vascular Surgery at the University of Oklahoma College of Medicine and director of the pediatric cardiothoracic surgical program at the Oklahoma Children's Hospital.

ALCAPA is a rare birth defect where the heart’s main blood vessels are not connected properly. Specifically, the left coronary artery comes from the pulmonary artery instead of the aorta. This mix-up causes the heart to receive blood with little oxygen, which can weaken or damage the heart muscle. (This is similar to what happens during a heart attack when the heart doesn’t get enough oxygen.) Common symptoms of ALCAPA include:

• Crying or sweating during feeding
• Poor feeding
• Rapid breathing
• Sweating
• Symptoms of pain or distress (often mistaken for colic)
• Cyanosis (blue or purple tint to gums, tongue, skin, and nails)
• Poor weight gain
• Heart murmur

About 1 in 300,000 newborns have this condition.

Diagnosing ALCAPA can be hard because symptoms are often different for each patient. Some babies may have trouble feeding or have rapid breathing. Other babies might seem colicky or have a bluish tint to their skin. In children, symptoms can be harder to spot. Signs like poor weight gain or sleepiness can be mistaken for other common illnesses.

Sometimes symptoms don’t show up until later in childhood or even adulthood, making it harder to diagnose ALCAPA. Finding the abnormal artery usually requires special imaging. Even then, it can be hard to see. However, new imaging tools and tests are helping doctors find ALCAPA sooner.

Although part of Mayleigh’s heart was only functioning at 13%, she seemed healthy, active, and happy. The only symptom Caleigh could pinpoint was that her baby struggled getting full when feeding and wouldn’t take a bottle or any solid food. Because of the lack of usual symptoms, Mayleigh’s serious condition had gone almost unnoticed since birth.

Heart Repair

Surgery is required to correct ALCAPA. Doctors can move the abnormal artery to the aorta or make a tunnel to connect it (Takeuchi repair). In serious cases, a heart machine or transplant might be needed.

“Dr. Burkhart told me that while the surgery is risky, the success rate is high,” explained Caleigh. “He was confident in the outcome and that gave my husband and me confidence.”

Dr. Burkhart performed Mayleigh’s surgery on Jan. 6, 2025, just after she turned 10 months old. It took him a few hours. During this time, he moved the artery to the correct place and rebuilt it using tissue from her heart. In a baby Mayleigh’s age, the artery is tiny, around 2-3 millimeters in diameter. This makes the surgery delicate and requires careful, precise work to make sure the artery connects properly and blood flows as it should.

“Mayleigh’s ALCAPA was far from her aorta,” said Dr. Burkhart. “Fortunately, by using surrounding tissue to construct a tunnel, we were able to successfully implant the coronary into the correct place on her aorta.”

It takes time for the heart to regain function after the surgery, especially since Mayleigh’s ALCAPA went undiagnosed for so long. Dr. Burkhart expects that her heart will return to normal function in six to 12 months.

Recovering and Growing

After a three-week stay in Oklahoma Children’s Hospital, Mayleigh was able to go home to finish her recovery.

Caleigh shared that Mayleigh is doing well — playing, dancing, and starting to eat solid foods. Despite the challenges she has had, she is a happy girl. She is learning to walk and enjoys playing peekaboo. She loves music and tries to dance.

“We are fortunate to have Dr. Burkhart in Oklahoma City,” Callie explained. “He’s one of the best pediatric heart surgeons in the United States. His care team has been exceptional, and we are grateful for the successful surgery and ongoing support.”

With groundbreaking treatments and a strong multidisciplinary team at Oklahoma Children’s Hospital Heart Center, children with complex heart conditions can get the expert care they need to help them thrive and live life to the fullest.

At Oklahoma Children’s Hospital, families have access to heart care from one of the Top 50 Best Children's Hospitals in the nation for Pediatric Cardiology & Heart Surgery according to U.S. News & World Report. Each year, the Heart Center team provides care for more than 15,000 pediatric cardiology visits and performs over 500 pediatric heart surgeries. Their experience and expertise help them deliver exceptional care. At Oklahoma Children's Hospital Heart Center, the success rate for children undergoing open heart surgery is 98.8% — exceeding the national average, regardless of the surgery’s complexity.

Request an appointment or referral to find out more about diagnostic tests and clinic visits for children's heart care at Oklahoma Children's Hospital.