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Fetal Congenital Heart Disease: What Happens When a Problem is Detected?

Fetal Congenital Heart Disease

Anticipating a new addition to the family creates a swell of well wishes and support from family members and friends. This wave of collective joy carries the mother-to-be through the ups and downs of pregnancy, from radiant skin to morning sickness, and from newly lustrous hair to swollen ankles. An expectant mom does everything within her control to ensure that all goes according to plan throughout the pregnancy and delivery. So it can be devastating for parents-to-be to learn that their baby may have congenital heart disease, which is sometimes referred to as a congenital heart defect.

Those parents turn to the UAB Fetal Diagnosis and Care Center for information, support, and medical care. According to Luisa Wetta, MD, associate professor of Obstetrics and Gynecology in the UAB Department of Maternal & Fetal Medicine, congenital heart disease may be suspected as early as 18-20 weeks into the pregnancy, when the mother-to-be has an ultrasound. “At that point, she may be referred to our prenatal diagnostic clinic, where we’ll do a detailed ultrasound to assess all of the baby’s anatomy, including the heart,” Dr. Wetta says. “If a cardiac problem is suspected or detected, she’ll be scheduled at 22 to 24 weeks for a follow-up fetal echocardiogram.”

“We’re evaluating detailed structures of the heart,” Dr. Wetta continues. “Those extra four weeks let the baby grow so we can visualize vessels that are difficult to see earlier in a woman’s pregnancy.”

While several types of cardiac conditions can be identified at this time, the most common problems are holes between the heart chambers, called atrial septal defects and ventricular septal defects (VSDs). Rarer and more complex types of heart abnormalities identified include tetralogy of Fallot, a combination of structural issues that causes blood flowing out of the heart to have low oxygen levels, and hypoplastic left heart syndrome or hypoplastic right heart syndrome, blood flow problems caused by underdevelopment in one side of the heart.

What’s Next?

Understandably, parents who learn that their baby has congenital heart disease feel shaken to the core. UAB Medicine’s multidisciplinary team – which includes a maternal-fetal medicine physician such as Dr. Wetta, a genetics counselor, and a pediatric cardiologist – quickly steps in. They are ready to guide parents through the remainder of the woman’s pregnancy, the delivery of the baby, and the care needed following the baby’s birth.

The pediatric cardiologist on the UAB team might be Robb Romp, MD, medical director of Cardiology Inpatient Services at UAB Medicine. “By the time the family meets with the team, they’ve gotten past their initial shock and are ready to digest what’s going on and how we’re going to treat the baby,” he says. “During their visit, the family is usually given a tour of UAB’s intensive care nursery and the cardiac intensive care nursery.”

According to Dr. Wetta, the mother-to-be usually has monthly ultrasounds throughout the rest of her pregnancy to monitor the baby’s growth and function of the heart. “Our goal is to deliver the baby at term, especially if surgical intervention is planned after birth,” she says. Noting that fetal heart disease doesn’t necessarily lead to a cesarean section, she adds, “Except in rare instances, cesarean delivery is usually reserved for the usual obstetrical conditions.”

Parents are offered options for genetic testing, since some cardiac defects can be associated with genetic or chromosomal issues. Dr. Wetta quickly notes, however, “Not every baby with a heart defect has a genetic or chromosomal problem. Genetic testing is a way to gather more information about the baby’s condition and prepare to manage it after birth.”

Dr. Romp says expectant parents who meet with the UAB Fetal Diagnosis and Care Center team are better prepared for the road ahead. “Having that visit gives the family emotional security, because they’ve met some of the doctors and have a chance to get their mind around what’s going to happen to their baby,” he says. “With a prenatal diagnosis, we can demystify the process.”

Birthday Bombshell

Not every baby can be diagnosed ahead of time. According to Dr. Romp, about two-thirds of babies with complex heart disease are identified prenatally. “Fetal circulation is very different the day before you’re born and the day after you’re born,” he says. “Some heart defects are extremely challenging to recognize until circulation begins after you’re born.”

In those cases, the problem often is detected in the nursery, when the baby has low blood oxygen levels or low blood pressure. When that happens, Dr. Romp or one of his colleagues is called in to perform an echocardiogram, which uses ultrasound technology (high-frequency sound waves) to generate a visualization of the baby’s heart.

This can lead to a difficult conversation with the new parents about treatment options. “That’s a punch in the gut to the family, even though there are good outcomes for most congenital heart defects,” Dr. Romp says. “When there’s no preparation, it’s just incredibly traumatic.”

Dr. Romp says the cardiac problem most often missed during pregnancy is also the most common and least complicated. “It doesn’t matter if a ventricular septal defect – a hole in the heart – is diagnosed after the baby is born,” he says. “Most are so small that they don’t need treatment, and larger ones are usually surgically repaired when the baby is three to six months old.”

When Time is of the Essence

More complicated forms of congenital heart disease may require immediate attention. Dr. Romp says that transposition (when the pulmonary artery and aorta grow out of the wrong sides of the heart) and hypoplastic left heart syndrome are two such conditions. “Babies with these types of heart defects require medical therapies within hours of birth,” he says. UAB Medicine’s team of cardiac specialists diagnoses the problem, formulates a treatment plan, and determines the optimal timing of medicines, cardiac catheterizations, and surgeries.

Those specialists include pediatric cardiologists such as Dr. Romp, as well as congenital heart surgeons who only operate on babies. Pediatric cardiac intensivists – doctors who specialize in ICU care – work around the clock in UAB Medicine’s pediatric cardiac ICU to help ensure that these infants recover from therapy and are well enough to go home.

The Care Keeps Coming

UAB Medicine’s pediatric cardiologists are part of a child’s life for the long term. Dr. Romp, who has been working with babies and children for 17 years, says it’s common to see a baby on his or her birthday and then in the clinic throughout childhood. “I’m still taking care of them when they’re 15 years old,” he says. “I have the best job ever.”

Once pediatric cardiac patients reach the age of 18, they transition to specialists who treat adult congenital heart disease (ACHD), an area in which UAB Medicine has extensive expertise. Because there appears to be a genetic component to some congenital heart defects, patients who were born with heart problems can be seen by the UAB Division of Maternal and Fetal Medicine when they’re ready to start a family, thus completing the circle of care.

Dr. Romp understands the anxiety of a family that is expecting a baby with heart disease, and he works to ease their concerns. When an issue is diagnosed prenatally, the UAB Medicine team can help separate myth from fact. “With large VSDs, families assume that it’s terrible, and we’re able to tell them that those babies do great and there are almost never long-term problems,” he says. “Even with complicated heart defects, we can help prepare families for the kinds of surgeries required, the timeframe, and the expected outcomes, which for the most part are still very good.”

For babies with serious fetal heart disease, obtaining qualified care before and after birth is critical, and that’s the goal of UAB Medicine’s state-of-the-art Fetal Diagnosis and Care Center. “If the baby will need postnatal therapy, it makes sense for the family to get established here at UAB, get the baby delivered here, and get postnatal care planned here,” he says.

Click here to learn more about the UAB Fetal Diagnosis and Care Center, and click here to learn more about congenital heart disease care at UAB Medicine.