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Fetal Cardiology

3Colorado Fetal Care Center

What are congenital heart defects?Congenital heart defects are the most common form of birth defect. Ranging from a simple hole in the heart that closes spontaneously to very complex defects that require multiple surgeries, these defects can be diagnosed as early as 14 weeks’ gestation.

What is an arrhythmia? Arrhythmias result from abnormal or damaged electrical pathways in the heart that cause the heart to beat either too slowly or too quickly.

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54 Colorado Fetal Care Center

Caring for heart defects and arrhythmiasIn decades past, most children with serious heart defects or arrhythmias did not survive. That’s not the case today. With advancements in treatment, surgery and cardiac care, children born with heart disease and arrhythmias are surviving to become healthy, thriving adults.

Their conditions are lifelong. They require ongoing monitoring and specialized care. Working together, our comprehensive teams of specialists and subspecialists provide state-of-the-art, compassionate care for kids with heart disease or arrhythmias, from before birth through the rest of their lives.

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PRENATAL DIAGNOSIS AND TREATMENT

With comprehensive evaluation, consultation and treatment 24 hours a day, 7 days a week, we’re ready to care for heart disease or arrhythmia at a moment’s notice. These aren’t easy diagnoses for any family to cope with, but we do our best to make the process easy to navigate.

Concierge Services: When you contact us, a nurse coordinator will guide you through your entire experience: transportation, lodging and scheduling with each specialist you’ll see, making appointments as efficient and convenient as possible.

One day appointments: Mothers get diagnostic testing and meet their care team to discuss the results, all on the same day. This one-stop appointment covers prenatal management, delivery recommendations and long-term outlook. You’ll walk out with a comprehensive care plan, and your team will be with you every step of the way.

Prenatal diagnosis: By diagnosing heart disease or arrhythmia before birth, we can prepare for any intervention a baby may need, which improves outcomes for these newborns. In fact, more than half of our cardiac patients under 1 year old are prenatally diagnosed by our fetal cardiology team. With state-of-the-art fetal diagnostic capabilities, we can diagnose congenital heart defects as early as 14 weeks’ gestation and design treatment and delivery plans to optimize each baby’s health.

At-home fetal heart block monitoring: Fetal cardiologist Bettina Cuneo, MD, and her team of researchers found mothers could feasibly do heart rate and rhythm monitoring using a commercial Doppler monitor. By monitoring at home and keeping in touch with the cardiologist about the results, you spend less time at appointments and more time at home with the reassurance that your baby’s heart rhythms are normal.

Telemedicine: We believe high-quality care should never be out of reach. That’s why we’ve made our fetal cardiology services accessible no matter where you live. Our Fetal Cardiology Telemedicine Program offers providers and families 24/7 fetal cardiology consultations and echocardiogram interpretations via telemedicine technology. Working alongside local obstetricians and specialists, our fetal cardiologists can diagnose and manage fetal cardiac anomalies from miles away, allowing you to stay close to home throughout your pregnancy.

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LABOR AND DELIVERY

Children’s Colorado is one of only a few freestanding children’s hospitals in the nation with a dedicated labor and delivery unit, so mom and baby can stay together.

From prenatal evaluation to labor and delivery to our Cardiac Intensive Care Unit and our top-ranked pediatric cardiology team, our comprehensive continuum of care all happens under one roof.

Our Maternal Fetal Care Unit, where mom gets care before, during and after delivery, is just down the hall from our CICU, so mom and baby are never more than a few steps away. Our integrative care model helps make the transition to our CICU as seamless as possible, delivering babies into the capable hands of the Heart Institute pediatric specialists for any care they need.

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POSTNATAL CARE AND BEYOND

Fully integrated with our Fetal Cardiology Program, our nationally ranked Heart Institute is focused on your child’s long-term quality of life. Our expertise, innovative research and unparalleled capabilities and scope ensure your child will get the best possible care, whatever their needs, as long as they need it.

Heart Institute: Top ranked by U.S. News & World Report, we treat more than 20,000 patients a year. We’re also one of only three pediatric heart centers in the nation to report on all quality measures, far exceeding national standards. With more than 20 specialized heart programs for all types of heart and arrhythmia conditions — along with supportive resources like psychology, social work and Child Life — we believe in a family- and patient-focused approach to care.

Cardiac Intensive Care Unit: Our dedicated CICU is the only one of its kind in the entire region. We provide state-of-the-art management and monitoring for acutely ill cardiac patients and those recovering from heart surgery. Our care team, made up of highly specialized physicians, dedicated intensive care nurses, respiratory therapists, nutritionists, feeding specialists and others, works closely with heart surgeons and other caregivers. We round every day, involving parents as closely in the care plan as they want to be.

Pediatric heart rhythm and inherited arrhythmia clinic: Our heart rhythm team is devoted to the care of newborns, infants and children with arrhythmias. We work closely with our pediatric cardiology geneticists to determine if other members of the family may also be at risk for arrhythmia.

Complex Congenital Heart Disease and Development Clinic: For babies with complex congenital heart disease who will need a series of surgeries to improve circulation and help them thrive, this follow-up clinic offers deep expertise and integrated, comprehensive care.

Adult Congenital Heart Disease Program: Improved treatment for kids with congenital heart disease means the vast majority of babies born with even the most complex conditions now survive to lead full, active lives as adults. Our adults congenital heart disease experts understand the unique needs of these patients, and how they’re different from patients with heart diseases typically treated in adult clinics.

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When We Heard Her CryAmy Witt was just going to go to the doctor’s office and let them tell her she was crazy. She didn’t know what it was, but something felt off. She was 29 weeks pregnant. She didn’t want to take any chances. She wanted to put her mind at ease.

Instead, she learned her baby’s heart was beating at 70 beats per minute — less than half the normal rate.

“At first they said I might need an emergency c-section that day,” Amy recalls. “Then I met with a fetal cardiologist, and he said it was a benign arrhythmia and not to worry about it.”

But 10 days later another heart monitor confirmed the worst: Not only was the arrhythmia not benign; the baby was in second-degree heart block. Amy was scared. By the time she finished some internet research on heart block, she was terrified.

“I have a family friend in Chicago who used to work at Northwestern, and I called her up and said, ‘give me the name of the best fetal cardiologist in Chicago. I will move there,’” Amy says. “She put me in touch with someone at the children’s hospital there and they said, ‘Yeah, we’d be happy to, but the best specialist to see is actually right there at Children’s Hospital Colorado.”

Amy found out about the heart block on a Tuesday. Wednesday, she was seeing that specialist: Bettina Cuneo, MD, Director of the Fetal Cardiology Program at Children’s Colorado’s Colorado Fetal Care Center. Dr. Cuneo recognized the signs of anti-SSA antibodies, found in only about 1% of pregnant women —only 2% of whom develop fetal heart block. Without treatment, the heart block would continue to get worse, possibly necessitating a pacemaker at birth.

Right away, Dr. Cuneo started Amy on medications that would reduce the inflammation and stop further damage.

She also set Amy up with a doppler heart monitor —the kind you can buy off a shelf —she could use to monitor her baby’s heart at home. (Dr. Cuneo asked her to monitor once a day. She did it much more than that.)

Meanwhile, Amy went in for visits once a week, and she didn’t waste them. She talked to anesthesiologists, electrophysiologists, neonatologists. She took a tour of the Cardiac Intensive Care Unit and asked every question she could think of. And when the time came for baby Viola to be born, Dr. Cuneo was there, too. (“She got there before my husband,” Amy jokes.)

“They said if she comes out crying and pink, we’re going to bring her up to you so you can see her before we do the assessment,” says Amy. “When we heard her cry —I feel really emotional right now —everybody in the room started clapping.”

Viola would still need evaluation in the Cardiac Intensive Care Unit, just a floor down from the Colorado Fetal Care Center’s Labor and Delivery Unit, for a few days. But her heartbeat was so strong she was ready to go home before even Amy was. Amy’s care team had to figure out how to make space for the baby in Amy’s room.

Five months later, Viola is in great health. The care team continues to monitor her heart, but it’s possible at this point she may not need a pacemaker until high school. That’s a best-case scenario, but thanks to fast treatment and a little luck, it’s well within the realm of possibility.

“Honestly there are a lot of days when I forget she has any sort of heart condition,” says Amy. “She’s a perfect little baby, growing and doing all the things babies do, rolling over, cooing, talking to me. She’s just fine.”

“They said if she comes out crying and pink, we’re going to bring her up to you so you can see her before we do the assessment. When we heard

her cry — I feel really emotional right now — everybody in the

room started clapping.”

–AMY, VIOLA’S MOM

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Diagnosing Eli’s Fetal Cardiac MassThe 20-week ultrasound was supposed to be exciting. Leetal Birger and her husband, Josh Rubinstein, couldn’t wait to see their baby’s hands and feet, a first glimpse of his little face.

“They do the organs last,” she recalls. “And when they got to the heart, there was this silence in the room. Finally, the ultrasound tech was like, ‘I’m going to have to call the doctor.’”

Leetal’s baby, Eli, had a mass on his heart, a tumor. It was big, nearly 40% of the heart’s mass. The good news was that wasn’t blocking anything, and they didn’t think it was cancer.

The size of it put Eli at risk for arrhythmias, which could shorten Leetal’s pregnancy and potentially cause fetal heart failure or even death. That was the bad news.

A first diagnosis: rhabdomyoma “We were obviously in the worst shape,” Leetal says. “Just devastated. We didn’t know what to do. You know? Do we continue the pregnancy? Does this child deserve that kind of life? So many questions.”

Leetal thought a family friend at UCHealth, next door to Children’s Hospital Colorado on the Anschutz Medical Campus, might have some answers. Her friend did.

“She said, ‘There’s no doubt in my mind, you need to be at Children’s Colorado,” says Leetal. “When it comes to your child’s life, you want the best of the best.’”

How fetal magnetocardiogram put a family at ease“I received the call Sunday afternoon and saw the family that Monday morning,” remembers Bettina Cuneo, MD, Director of the Fetal Cardiology Program at Children’s Colorado’s Colorado Fetal Care Center. “Right away, I knew I wanted a more complete picture of the electrical activity in Eli’s heart.”

The best way to get that information would generally be an electrocardiogram, or ECG. ECG doesn’t work in fetuses, but Dr. Cuneo knew of two sites in the country that could perform a test called a fetal magnetocardiogram, or f/MCG, which converts magnetic fields from the heart into electrical signals exactly like those of ECG. Because f/MCG is still a research tool, the research grant paid for Leetal and family to travel to Madison, Wisconsin, to get the test.

In Leetal’s case, though, the study was a win-win. The Madison team got study data, and Dr. Cuneo got the information she needed.

“The f/MCG was completely normal,” says Dr. Cuneo. “Which is very unusual for this type of tumor.”

The only one recovering Eli’s stability in the womb allowed for the routine, vaginal birth Leetal wanted. Where possible, that’s standard at the Colorado Fetal Care Center, where Eli could be evaluated and treated right away.

But in the end, the biggest trial of the birth experience was one far more common than a heart tumor: Eli was breech. He was born via C-section on a Tuesday. That Friday, equipped with the kind of handheld doppler heart monitor you can buy off a shelf, they went home, surgery indefinitely postponed.

And nearly a year later, Eli’s heart hasn’t missed a beat. His care team is still monitoring the tumor, which is growing smaller and smaller. Whatever happens, it’s an experience Leetal will never forget.

“I did everything in my power to get him to flip.” She chuckles. “Massage therapy, acupuncture. I didn’t want to be recovering from surgery and at the same time trying to deal with my baby recovering from surgery. But it turned out I was the only one recovering. Eli’s doing great.”

“When it comes to your

child’s life, you want the best of the best.”

– LEETAL , EL I ’S MOM

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