Baby Born With Half a Heart Inspires Mom to Change Her Life

Stanford Children’s congenital heart surgeons save newborn with serious single ventricle heart defect

Julie Chisum is a strong, independent young woman who struggled to find direction in life. That is, until her son Ryann was born.

“He has changed my whole life completely,” she says.

At 21 weeks along in her pregnancy, Julie received some hard news: “Your baby has a heart problem.” Those are difficult words to hear for any parent, but especially for parents of babies with serious congenital heart disease.

“My life was not very positive, but once I had Ryann, I turned it completely around. I knew that for him to get better, I had to have the right mindset. Even when I got hard news, I made the most of it,” she says.

Michael Ma, MD, chief of pediatric cardiothoracic surgery at Stanford Medicine Children’s Health, is in awe of parents like Julie who remain strong despite the emotional ups and downs they inevitably face. “I was struck by how Julie completely transformed once she welcomed Ryann into the world. She was 100% committed to her child and family, amazingly dedicated and wonderful to work with,” Dr. Ma says.

Born with half a healthy heart

At Julie’s prenatal wellness check in Modesto, California, her doctor noticed that Ryann’s heart was not beating well. She sent Julie to the Stanford Children’s Fetal Cardiology Program for a closer look and comprehensive care. There, she received biweekly checkups, including echocardiograms, counseling, and planning.

“They created a care plan that included possible heart surgery immediately after birth,” Julie says.

The Fetal Cardiology Program team diagnosed Ryann with hypoplastic left heart syndrome (HLHS), a serious congenital heart defect where the left side of the heart doesn’t fully develop, affecting blood flow within the heart.

“With HLHS, all babies need surgery after birth to survive,” Dr. Ma says.

When one side of the heart is undersized, children have what’s called a single ventricle heart—one working heart ventricle (chamber) instead of two. Heart doctors and heart surgeons do everything they can to support that single ventricle to do the job alone, which often means having a series of heart surgeries.

Children with a single ventricle heart need special, lifelong care. The Single Ventricle Program at Betty Irene Moore Children’s Heart Center at Stanford Children’s provides truly multidisciplinary, in-depth holistic care to empower children with a single ventricle heart to live their fullest lives.

A series of heart surgeries to improve Ryann’s heart

The typical series of surgeries for babies with a single ventricle heart is a Norwood surgery, followed by a Glenn, and finally a Fontan. The first two surgeries are performed in the first six months, and the last around 4 years of age. Each builds upon the last to create a single strong heart chamber.

“The Norwood, Glenn, and eventual Fontan surgeries are a very ingenious solution for kids born with one working heart ventricle,” Dr. Ma says.

Ryann didn’t need lifesaving surgery immediately at birth, but within a few days he had bands placed around his branch pulmonary arteries (main connections between heart and each lung) to control the speed of blood flow between his heart and lungs. The bands helped stabilize and ready Ryann for the bigger surgeries to follow. A month or so later, he had the Norwood procedure, a crucial and difficult surgery.

“Even though the Norwood was developed 40 years ago, it is still one of the riskiest procedures we perform as congenital heart surgeons,” Dr. Ma says. “These children are extremely fragile, and it takes a well-orchestrated coordinated effort across many specialties to care for them—something we do very well at Stanford Children’s.”

With the Norwood, Dr. Ma built Ryann a new aorta, the main artery that carries blood from the heart to the body. He also created a connection from the aorta to the lungs, using a shunt (small tube).

Because Betty Irene Moore Children’s Heart Center at Stanford Children’s operates under the philosophy of giving as many children as possible a chance at life, they often take on children with heart disease who are turned away from other centers.

“Ours is not a philosophy every center takes, and it’s not always an easy philosophy to have, but we want to offer a chance to families who ask us to do everything we can and are well informed on what that means,” Dr. Ma says. “We have achieved exceptional outcomes in spite of taking on very high-risk heart surgery patients.”

Ryann did well after the Norwood surgery, but his fragile state meant some struggles with breathing, mechanical support, and tube feeding.

“With Dr. Ma, I knew my son was in good hands and I didn’t stress one bit,” Julie says. “He has such confidence and such a great track record.”

At around 5 months, Ryann underwent the Glenn, the second of his single ventricle surgeries. With the Glenn, Dr. Ma placed a new shunt to connect large blood vessels to the heart and ensure that oxygenated blood flowed to the lungs.

“Dr. Ma and Ryann’s other heart doctors, including Maria Batsis, MD, are amazing. They really care about Ryann and want him to succeed,” Julie says.

Julie was impressed by how everybody came together to help Ryann heal. After each surgery, Ryann received advanced critical care support from the Stanford Children’s Cardiovascular Intensive Care team, who used their deep expertise in complex heart conditions to help Ryann grow stronger.

“The doctors, nurses, and respiratory therapists, like Kelly Jones, RRT, did everything they could to care for Ryann, including pulling double shifts and putting in overtime during tough times,” she says. Julie also greatly appreciates the support she received from her social worker, who helped her meet basic needs like housing, gas, and food.

To ready herself for life after the hospital, Julie insisted on being involved in Ryann’s daily care at every turn. The whole Betty Irene Moore Children’s Heart Center team noticed and admired her commitment.

“I did everything myself because I wanted to be 100% self-sufficient in caring for Ryann,” the single mom says.

Ryann did well with the Glenn and was able to go home for the first time ever.

At home and enjoying everyday life

Julie feels like she has finally reached the end of a long road. After spending Ryann’s first six months of life in the hospital, she is happy to be home, where Ryann can simply be a baby and do normal baby things.

“I have to get used to the life of having a special needs baby, but I know I can do it. I’m a quick learner. And I have support from Stanford Children’s and his local care team in Modesto,” she says.

Ryann is receiving physical therapy and occupational therapy near home in coordination with the Single Ventricle Program team at Stanford Children’s.

Eventually, many children with a single ventricle heart like Ryann will need a heart transplant. Usually this happens when children become adolescents or adults, yet there’s a chance that Ryann may need it sooner. His surgeries fixed much of his heart issues, but because of how severe his defect was, his heart is not pumping as well as it could be. For this reason, he is also being followed by the Pediatric Advanced Cardiac Therapies (PACT) Program at Stanford Children’s Health’s Betty Irene Moore Children’s Heart Center, the combined heart failure and heart transplant program.

“While we do not believe he needs a heart transplant at the moment, we want to keep track of him proactively. By following him for mild heart failure, we can prolong the life of his current heart for as long as possible,” Dr. Ma says.

For now, Julie is simply enjoying being Ryann’s mom, and being home together.

“Just loving him makes him as happy as can be,” she says.