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Stanford Medicine Children’s Health provides specialized heart care to give Judah the best possible outcome
Each fall, Judah Morgan, now age 6, and his mom, Heather, take a special trip. They leave behind his dad, Sam, and his two older sisters, Saige and Ivy, and drive off, just the two of them. They don’t go to a theme park or a special sporting event, like you might imagine. They go to Lucile Packard Children’s Hospital Stanford.
“It’s just him and his mama in a hotel overnight with no sisters, so it feels special to him,” Heather Morgan says.
Even though their getaway involves spending a full day meeting with various doctors and getting medical tests, Judah always looks forward to it. Judah was born with a single ventricle heart—one working heart ventricle instead of two—which needs lifelong care. Hence, the annual in-depth multidisciplinary evaluation done by the Stanford Medicine Children’s Health Single Ventricle Program team to ensure that his heart is working well and supporting his active, full life.
“He thinks it’s grand. This year, he got a backpack and school supplies from the Lucile Packard Children’s Hospital Child Life team. It’s a long day, so the Stanford Children’s Single Ventricle Program’s care team makes sure it’s as engaging and fun for kids as possible,” Heather adds.
Born with a complex heart condition
During Heather’s pregnancy, a fetal echocardiogram revealed that Judah had a serious congenital heart defect called hypoplastic left heart syndrome (HLHS). In other words, the left side of his heart wasn’t developing properly. With his condition, a heart surgery called Norwood is a common solution. Doctors at the Morgans’ home hospital in Sacramento, California, planned to do just that, but a new discovery on an echocardiogram performed after Judah’s birth set the family on a course to Stanford Medicine Children’s Health.
“Fetal echocardiograms are helpful, but they do not show the complete picture. After birth, doctors can see details on an echocardiogram with a probe that is just an inch away,” says Frank Hanley, MD, world-renowned pediatric heart surgeon at Stanford Children’s Health’s Betty Irene Moore Children’s Heart Center.
The echocardiogram performed after birth showed that Judah had coronary fistulas (abnormal connections between his heart arteries), which made the Norwood surgery riskier than before. The doctors then referred the family to Stanford Children’s.
“He was transferred when he was just 12 hours old,” Heather says.
Single ventricle heart conditions often require a heart surgery right after birth (the Norwood or a hybrid), followed by two more heart surgeries as the child grows—the Glenn at 3 to 6 months old and the Fontan at 2 to 3 years old. All three surgeries repair defects and ensure adequate blood flow to sustain life.
Choosing a lifesaving hybrid procedure
When Judah and his family arrived at Stanford Children’s, wheels were quickly set in motion. A large team of heart specialists met to determine the ideal heart treatment, tailored for Judah, that would give him the best chance at a healthy life.
“We made a consensus decision as a large team of pediatric cardiologists, heart surgeons, cardiac anesthesiologists, and single ventricle specialists to pivot from a planned Norwood to a hybrid procedure for Judah, for a better chance of obtaining a successful outcome,” says Dr. Hanley.
The practice of having frequent meetings among an expert multidisciplinary or interdisciplinary team, who freely share opinions and continually reassess the best path forward for our complex heart patients, is a hallmark of the Betty Irene Moore Children’s Heart Center.
“For these infants born with complex heart conditions, you can’t have rigid protocols that work for 80% of children. If you apply that to 100% of patients, it won’t be the best option for the remaining 20%, like Judah. Had we stuck to the plan for a Norwood, he would have had a much higher risk of a poor outcome, and so it is important to tailor treatment and care to each patient,” Dr. Hanley says.
The hybrid procedure that Judah received combines interventional cardiology techniques (heart procedures and interventions performed in the cardiac catheterization lab) with heart surgery. A hybrid procedure is performed without a heart-lung bypass machine, making it less invasive and easier on the baby. The purpose of this combined cardiac catheterization–heart surgery technique was to improve the blood flow within Judah’s heart and between his heart and lungs.
For a family with a very sick newborn barely a day old, the decision on heart surgery was a difficult one.
“It was very scary, but Dr. Hanley gave us confidence to move forward,” Heather says.
The hybrid surgery went well, but Judah’s highly complicated heart, coupled with coronary artery concerns, led to some complications. After the surgery, exceptional care from the Cardiovascular Intensive Care Unit (CVICU), ongoing care from his interdisciplinary team of heart providers, and constant love and support from his family helped him overcome obstacles and recover.
“These are very high-risk pediatric heart patients, and the highest risk is in the first few months of life,” Dr. Hanley says. “Achieving the highest chance of success with the lowest risk of complications can often be a tricky process. When you manage these children with complex heart conditions, you have to stay flexible, think on your feet, and always be willing to adjust.”
Early on, when Judah’s parents found out about his fetal heart defect, they chose the name Judah, in reference to Judah having “the strength of a lion” in the Bible. It was strength they knew he would need to survive his critical heart condition.
“In the hospital, my mom made a sign for the end of his bed. She drew a lion holding a heart, so his nickname became Judah the Lion Heart,” Heather says.
Going home between heart surgeries
Judah would need his second heart surgery—a modified Glenn—at 3 months old. Dr. Hanley calls it a Glenn plus, since cardiothoracic surgeons need to perform a Glenn plus other procedures to complete the skipped Norwood.
The norm among hospitals is to keep a single ventricle child in the hospital during this time (called interstage) to manage their heart health. However, Stanford Children’s offers something different. When infants are at a good weight and growing well, the Single Ventricle Program team makes it possible for them to go home between surgeries. Judah was the first baby allowed to go home after a hybrid procedure at the Moore Children’s Heart Center.
“Judah was a full-term baby, so he was able to come home. His Stanford Children’s care team looked at the whole picture of him to decide, which was wonderful,” Heather says.
The Morgans were then enrolled in the Single Ventricle Program’s home monitoring program at Stanford Children’s, where advanced practice nurses taught the family step-by-step how to closely monitor Judah for any signs of heart distress. They were given tools to track vital indicators, such as oxygen saturation, weight, and heart rate, on a daily basis and told to call when levels were out of range.
“We see significant advantages of getting babies home with their families. They grow, thrive, and develop better at home. It’s a big advantage to be able to offer this home monitoring program to our patients and their families,” says Sharon Chen, MD, pediatric cardiologist and director of the Single Ventricle Program. “A lot of education goes into teaching parents and empowering them.”
Parents can call 24/7 with a concern, and they meet with their heart care team once a week. In the meantime, they bond with their baby and encourage neurodevelopment through natural daily interactions and care.
“It’s somewhat unique to send hybrid patients home interstage, but we offer it because our job isn’t to just fix babies’ hearts, it’s to care for the whole child and family,” Dr. Chen says. “Judah carved the way for other single ventricle heart babies with hybrid surgeries to follow him.”
Undergoing two more surgeries—the Glenn and the Fontan
At 3 months old, Judah returned for a modified Glenn procedure, and at 3 years old, he had the Fontan procedure. Each surgery builds on the other to improve blood flow in the heart and to the body so that a child can live a normal life. Heart surgeons at Stanford Children’s pioneered a unique off-pump Fontan procedure—something we are known for—meaning that we make it possible for a child to not have to go on a heart-lung (bypass) machine, which results in better outcomes for our heart patients.
Our survival rate for the Fontan procedure is higher than 97%, despite treating children with very complicated needs who have often been deemed untreatable by other heart centers. Nearly 30% to 40% of our patients are referred to us from other heart centers around the country, many seeking the benefits of our unique off-pump approach. The Fontan empowers children born with one heart ventricle instead of two to live an active, high-quality life.
However, a Fontan procedure is not a cure, and Judah’s abnormal coronary anatomy is still there. Eventually, most individuals who are born with a single ventricle heart, including Judah, will develop heart failure and will need a heart transplant. Yet, with consistent, in-depth care—like that provided by the Single Ventricle Program—many children do well into adulthood. Continuous expert, specialized single ventricle care provided by a large interdisciplinary team of specialists who are watching for and addressing the slightest changes in health, is vital to keep the hearts of kids like Judah functioning optimally through the years.
Lifelong care, yearly checkups at Stanford Children’s Health’s comprehensive single ventricle clinic
Every year from now through young adulthood, Judah and Heather will go on their special, annual trip to Stanford Children’s for his comprehensive evaluation. Now that they live closer, the Morgans have also decided to make Dr. Chen their child’s primary cardiologist—so they will see her even more often.
On these annual trips to the Single Ventricle Program, Judah gets a comprehensive heart checkup from cardiologists who specialize in single ventricle hearts, and much more. For his heart, he receives an echocardiogram, heart rhythm monitoring, an exercise test, imaging, and extensive bloodwork. The family also meets with a dietitian, a neurodevelopmental psychologist, a social worker, and a child life professional, as needed. Judah can also receive mental health support from the Single Ventricle Program’s dedicated mental health clinician, if needed.
The family met this year with an education specialist who is collaborating with Judah’s school to make sure his particular physical needs are met, given his heart medications.
“Lifelong, ongoing single ventricle care is not something offered at a lot of other hospitals, and when I researched it, Fontan kids who go to comprehensive single ventricle programs have a higher chance to grow older and do better, thanks to having all these specialists watching over them, ready to intervene,” Heather says. “Even without the exceptional surgical heart care, just the presence of this comprehensive Single Ventricle Program would be enough to make us want to come to Stanford Children’s.”
Fully using his lion heart
It wasn’t an easy road, but Judah’s three heart surgeries are now behind him. Because of his highly complex condition, his heart will never be deemed normal. Yet that doesn’t stop Judah from being a normal, active, funny, bright, fun-loving 6-year-old.
“Despite going through multiple heart surgeries and all the uncertainty, Judah’s a cute, spunky kid who is thriving. He and his family have remarkable resiliency,” Dr. Chen says. “They encourage him to just be a kid.”
Judah is playful and full of personality, which helps him make friends easily. His current favorite things are skateboarding, dinosaurs, and cars.
“We’ve had our struggles, but you would never guess it looking at him. He’s an active boy who is growing well and keeping up with his peers,” Heather says. “He doesn’t always have energy like other kids, but he’s completely confident anyway. He is always saying, ‘I’m the strongest’ or ‘I’m the fastest.’”
That’s because he’s Judah the Lion Heart.
Learn more about the Single Ventricle Program at Stanford Medicine Children’s Health >
Authors
- Lynn Nichols
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