Heart Surgery Averts Transplant and Turns Teen From Blue to Pink

Family of teen was told she couldn’t be saved, but doctors at Stanford Medicine Children’s Health offered solutions.

When Naomi Debello, from Winters, California, went in for a haircut, the stylist said, “I love your blue lip stain.” She didn’t realize that the color was due to a heart condition Naomi had had since birth that caused cyanosis—low blood oxygen that turned her fingertips, toes, and lips purplish blue. Naomi spent her entire life tinted blue until a life-changing heart surgery at the age of 14.

“The first time that I saw her natural coloring was after her open heart surgery,” says Marie Burns, Naomi’s mother. “She was pink and rosy, and not blue at all!”

Naomi was born with Ebstein’s anomaly, a rare, serious heart condition where the tricuspid valve between the upper and lower right chambers of the heart doesn’t form correctly in the womb, disrupting the flow of blood in the heart. Naomi’s form of Ebstein’s anomaly was so severe that she had only a single heart ventricle instead of the normal two ventricles.

As a toddler, Naomi received pulmonary artery reconstruction from world-renowned heart surgeon Frank Hanley, MD, at Stanford Medicine Children’s Health to improve blood flow. It was just a temporary fix at the time, with the assumption that she would need more surgeries or a heart transplant later in life. Naomi had a number of years where her energy was pretty good, but she had pulmonary stenosis—a narrowing of a valve between her heart and lungs, which restricted blood flow to her body. It left her feeling tired and short of breath. And blue.

“I didn’t have a lot of energy. I couldn’t walk much, so I had to use an electric scooter to get around high school my freshman year,” says Naomi, who is 18 years old today.

As she grew, she became more and more cyanotic, and her health continued to decline to the point that she sometimes needed a wheelchair. It was time to consider a heart transplant, yet her parents were given terrible news.

“Our local hospital told us that a transplant wasn’t possible and that we should start giving Naomi comfort care,” Marie says. “It was devastating.”

Marie decided to get a second opinion at Lucile Packard Children’s Hospital Stanford, hoping they could provide a different answer. She made an appointment for Naomi with Sharon Chen, MD, director of the Single Ventricle Program.

“Dr. Chen not only said a heart transplant was possible—she said, ‘We think Dr. Hanley can repair it with a heart surgery instead.’ I just about fell out of my chair,” Marie recalls. “Dr. Chen is the quintessential professional, yet so gentle. I think the world of her.”

Naomi’s doctors at Packard Children’s could have opted for a heart transplant, but instead they got creative and thought outside the box to give Naomi the best outcome with the least amount of disruption.

“She came to us for a transplant, but we stopped and considered all options. Dr. Hanley has incredible skills, and we decided, after a lot of review, that he could perform enough of a repair to make a big difference for Naomi,” says Dr. Chen.

The surgery was a complete success, even more so than expected. While her heart is not completely fixed, Dr. Hanley was able to increase its capacity by 50 percent, create good blood flow, and achieve normal oxygen saturation in her blood. For Naomi, this meant more energy and no more tints of blue.

“It was really exciting to wake up and learn the surgery worked. My parents were shocked, too. I felt a difference in energy right away,” Naomi says. “Even at the hospital I could walk around the hallways. It was completely life changing.”

Not only did the team at Stanford Medicine Children’s Health heal Naomi’s physical heart, but also they helped heal her emotional one. Facing a major open heart surgery and living with a chronic heart condition isn’t easy for anyone, especially a teen.

“I saw a cardiac psychologist for a few months after my surgery. She helped me understand my feelings around my heart condition,” Naomi says.

Naomi needed to recondition her heart slowly, over a period of a year or two. It meant a lot of physical rehabilitation. She developed an arrhythmia, something that is known to happen with Ebstein’s anomaly, and had to see an electrophysiologist and receive a pacemaker.

“I am extremely proud of Naomi. She is always optimistic, always cheerful,” Marie says. “She’s able to push through challenges and persevere.”

By opting for a surgical repair of her heart instead of a heart transplant, the doctors helped Naomi avoid a slew of anti-rejection medicines and an even bigger heart surgery. Heart transplants don’t last a lifetime, so she would have been looking at a repeat one down the line. She may still need a heart transplant someday, but right now she’s doing great.

“Dr. Hanley has legendary status in our household. When Naomi does something wonderful, we say, ‘Praise Hanley!’ Our gratitude for the Stanford [Children’s Health] team is beyond words,” Marie says.

Naomi brings hope and joy to younger children with heart conditions as a teen mentor at Camp Taylor in Modesto, California, a nonprofit medically supervised camp for children with heart disease. She attended the camp for years and was excited to be invited back as a teen mentor. Naomi is also looking forward to participating in Single Ventricle Heart Connections, a virtual event series sponsored by the Single Ventricle Program at Stanford Medicine Children’s Health and Camp Taylor. Today, Naomi sees the Stanford Medicine Children’s team in the Adult Congenital Heart program, who helps older children and teens manage their chronic heart conditions and transition to adult congenital cardiac care.

“The surgery has transformed my life. Now, I’m able to go on walks; ride my horse, Plum; and dance around for exercise and fun,” Naomi says. “I can even run! The first time I ran was quite a moment. I thought, ‘Wow! I can do this!’”

Naomi started college virtually last fall at Southern New Hampshire University, and she’s studying creative writing and screenwriting. She can’t wait to walk around campus in person once the pandemic allows.

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