Newborn Undergoes Lifesaving Open Heart Surgery at 3 Days Old

Boy receives congenital heart surgery quickly, thanks to Stanford Medicine Children’s Health specialty network team

Marcus Li’s young life changed instantly the morning after he was born. During a newborn screening, a standard congenital heart disease test uncovered a serious concern.

“He failed the test,” says Nikola Tede, MD, a Stanford Medicine Children’s Health pediatric cardiologist who sees patients in the North Bay. “He also had low oxygen saturation, which raised further concern.”

Marcus’s mom, Lena, was alone in her hospital room, still groggy and sore from a cesarean section, when doctors came in with unexpected news. Her husband, Wilson, had just stepped out to pick up their daughter from daycare. The family lives in Moraga and had been celebrating the arrival of their second child after a smooth, healthy pregnancy.

“I remember lying there, still recovering, when they told me something was wrong with Marcus’s heart,” Lena says. “Wilson wasn’t with me, and I was still trying to process everything. The pregnancy had gone so well, and our first child is perfectly healthy. I just couldn’t believe what I was hearing. I thought, ‘What? Is this really happening?’ It felt like the floor fell out from under me. We had no warning, no family history. I felt completely blindsided and helpless.”

Dr. Tede ordered an echocardiogram, a type of ultrasound that shows blood flow in the heart. “It revealed a rare form of congenital heart disease called total anomalous pulmonary venous return (TAPVR),” she says. “The only treatment is urgent neonatal heart surgery.”

With TAPVR, the pulmonary veins that carry blood to the heart from the lungs do not connect in the right spot during fetal development. It is often missed during pregnancy on ultrasound because blood does not flow in a baby’s pulmonary veins until after birth, when they start using their lungs. It can be identified on a fetal echocardiogram, but since there was no family history, Lena was not given one.

Approximately one in 7,500 babies are born with this type of heart disease in the U.S. each year. Essentially, Marcus’s heart was not getting the oxygen it needed to survive, and action needed to be taken quickly.

Yet, there was one hurdle in the way.

The family was at a San Francisco hospital that didn’t provide heart surgery for children. Marcus would need to be moved to a large children’s hospital. Luckily, their current hospital had heart doctors available, including Dr. Tede, who was on call. The specialty services location where she practices and which is part of the Stanford Children’s Health network, is right across the street.

“We are very grateful Dr. Tede was there that day to send Marcus to Lucile Packard Children’s Hospital Stanford,” Lena says.

Transporting Marcus to Stanford Children’s for heart surgery

After careful consideration and heavy consulting with doctors, Marcus was transported by Stanford Children’s Critical Care Transport team to the Betty Irene Moore Children’s Heart Center for urgent heart surgery. The Stanford Children’s pediatric heart center performs 600+ heart surgeries each year, more than most other centers in the nation, and specializes in caring for very sick, very small babies with heart disease.

“It’s a well-organized, seamless system when we transport young babies because we are all working under the same umbrella,” Dr. Tede says.

Dr. Tede had put in a call to Michael, Ma, MD, chief of Pediatric Cardiac Surgery at Stanford Children’s, and the two had discussed Marcus and the heart surgery, which involves moving the pulmonary veins to their correct location in the back of the heart.

“We’ve built collegiality over the years. It’s always nice to be able to call him or another heart surgeon on the phone and quickly discuss a case,” Dr. Tede says.

“When Dr. Tede calls, I answer, and I never question if she says it’s an emergency because of our long-standing trust,” says Dr. Ma. “We have a far-reaching, strong network of physicians in the Bay Area, and it’s great to have these partners who know when and how to escalate care through our system… I’m blessed to work with these talented cardiologists and their teams.”

Newborn undergoes heart surgery the next day

Marcus was scheduled for heart surgery the following morning, his second full day of life. “It was the darkest moment of our lives, having to sign the consent forms for surgery,” Lena says. “And kissing Marcus goodbye that morning was heartbreaking.”

“TAPVR is one of a few pediatric congenital heart disease emergencies, so once we identify it, we want to take care of it right away,” Dr. Ma says. “Rapidity of diagnoses and a fast path to surgery are important for a good outcome, and it is something we are uniquely suited to do.”

“Dr. Ma told me he had never lost a kid to TAPVR before. Once I heard that, I felt so relieved,” Lena says.

The heart surgery went just as planned. Marcus was on a heart-lung machine during the surgery, but he showed his strength by breathing on his own quickly afterward. When Dr. Ma came to tell Lena and Wilson that it went well, both were filled with immense relief.

“The first hour after the heart surgery Marcus was on a bunch of wires, but each day he overcame another obstacle,” Lena says. “It was pretty magical for a baby to have open-heart surgery and be back home within 10 days.”

The family appreciated how the doctors at Stanford Children’s explained everything that was happening and included them in daily meetings, and how the nurses were always cheerful and positive. “It gave us confidence in the care and made us feel like we had support,” says Wilson.

Home with a normal heart

Today, Marcus is a happy, active 1-year-old. “He started walking a few weeks ago, and he can already walk for a minute around the house, which is pretty amazing,” says Lena. “He is a curious boy who loves to explore everything, from rifling through kitchen cupboards to watching the goings-on at the park.”

“These days, his favorite thing is chasing after his big sister, Ellie, and trying to keep up with whatever mischief she’s up to,” says Lena.

The couple feels fortunate to have met Dr. Tede, who has remained Marcus’s cardiologist. They appreciate having access to her expertise nearby. Marcus received regular check-ups in his first year to monitor his heart. Everything looks great, so from now on, he will just come once a year.

“His heart is functioning the same as any other child’s,” Dr. Tede says.

Stanford Children’s not only includes Lucile Packard Children’s Hospital Stanford but also hospital partnerships and a health care network of 65 pediatric and specialty locations throughout the Bay Area—from the North Bay, down the Peninsula to Monterey, and across the bay to the Tri-Valley area.

Dr. Tede appreciates being a part of the larger Stanford Children’s pediatric cardiology team, where she can get a second opinion quickly and attend weekly meetings on complex cases, helping her more easily recognize complex and rare congenital heart diseases, like TAPVR.

“It was extremely important to have that continuity of care. It was absolutely critical for getting Marcus the lifesaving surgery that he needed,” Lena says.

Learn more about Stanford Medicine Children’s Health’s heart surgery and health care network.