What is congenital heart disease?
Congenital heart disease is a heart problem that develops in the womb, before a baby is born. The word congenital means “present from birth.” Many different heart problems are associated with congenital heart disease, from holes in the walls of the heart to more severe defects, such as underdeveloped pumping chambers. These problems can affect the structure, function, and/or rhythm of the heart and therefore interfere with the normal flow of blood through the baby’s body. Congenital heart disease is the most common type of birth defect. Each year, about 40,000 babies are born in the United States with a heart problem. One in four of these babies have critical congenital heart disease, a condition serious enough to require surgery or other medical procedures during their first year of life.
Who will be on my care team?
At the Midwest Fetal Care Center, a collaboration between Children’s Minnesota and Allina Health, we specialize in individual attention that starts with you having your own personal care coordinator to help you navigate your baby’s treatment process. We use a comprehensive team approach to congenital heart disease and any associated conditions. That way, you are assured of getting the best possible information by some of the most experienced physicians in the country. For congenital heart disease, your care team will include a maternal-fetal specialist, a pediatric cardiologist, a neonatologist, a cardiovascular surgeon (if needed), a nurse specialist care coordinator, a perinatal social worker, and several other technical specialists. This comprehensive team will follow you and your baby closely through the evaluation process and will be responsible for designing and carrying out your complete care plan.
What causes congenital heart disease?
The cause of congenital heart disease is often unknown. Certain factors can raise the chances of a baby being born with a heart defect, however. Women who had diabetes before they became pregnant are at higher risk of having a baby with a heart defect, as are those who develop certain viral infections, such as rubella, while pregnant. In addition, congenital heart disease has been linked to women’s exposure during pregnancy to certain medications and chemical toxins. Heart defects are also associated with several types of genetic disorders, including Down syndrome (trisomy 21). About half of babies born with Down syndrome have some kind of heart defect. Your care team at the Midwest Fetal Care Center will help you determine if there is a genetic cause for your baby’s heart disease.
How is congenital heart disease diagnosed?
Congenital heart disease can often be diagnosed during pregnancy. The first signs of a possible heart problem are usually identified during a routine prenatal ultrasound taken in the second or third trimester. If an ultrasound raises concerns, your obstetrician-gynecologist (ob-gyn) will refer you to a fetal care center, such as the Midwest Fetal Care Center, for a fetal echocardiogram (“fetal echo” for short). This non-invasive, high-resolution ultrasound procedure looks specifically at how the baby’s heart is structured and functioning while in the womb. At our center, your fetal echo will be performed by a pediatric cardiologist (a physician who specializes in fetal heart abnormalities).
A fetal echo can be done any time after the 13th week of pregnancy. Here are the main reasons your doctor may recommend that you have this procedure:
- Your ob-gyn has seen something during your routine prenatal ultrasound that raises concerns that your baby may have a heart abnormality.
- Your baby has a suspected chromosome or genetic abnormality.
- Your baby has a non-heart-related problem, such as a defect in the abdominal wall, a lung problem, a defect in the diaphragm (a congenital diaphragmatic hernia), a brain malformation, or a kidney abnormality.
- Either of the baby’s parents or a sibling of the baby has a history of congenital heart disease.
- The baby’s mother has pre-existing type 1 or type 2 diabetes.
- Blood tests reveal that the baby’s mother has antibodies (anti-Ro/SSA antibodies) associated with neonatal lupus. These antibodies can be passed through the placenta from the mother to the baby and affect the baby’s heart rhythm and function.
- The baby’s mother has taken certain medications that increase the risk of a heart defect.
- The baby’s mother has had a rubella infection during the first trimester.
- The pregnancy occurred using assisted reproductive technology, such as in vitro fertilization.
- The pregnancy involves monochorionic identical twins—ones who share the same placenta.
Early detection of congenital heart problems saves lives. Diagnosing a heart defect before a baby is born can lead to better outcomes from later surgeries and may reduce the risk of long-term neurological problems. While most heart defects can be detected while babies are still in the womb, many health systems lack the resources to diagnose — and treat — those conditions. The Midwest Fetal Care Center is one of the few comprehensive programs in the Upper Midwest region equipped for both prenatal and postnatal cardiovascular care.
How is congenital heart disease managed before birth?
After we have gathered all the diagnostic ultrasound information, our full team will meet with you to discuss the results. A prenatal diagnosis of a heart defect provides families time to learn about their baby’s medical condition and to make plans for the remainder of the pregnancy and the delivery of the baby. As your pregnancy progresses, we will perform regular fetal echocardiograms to monitor how your baby’s heart is growing and to identify any changes. You will also continue to meet with our cardiology team. They will educate and support you as you navigate your baby’s diagnosis and will help you plan for the baby’s birth and postnatal care.
Your cardiology team will communicate often with your ob-gyn to ensure optimal care for both mother and baby. At the Midwest Fetal Care Center, we will partner with your primary ob-gyn care team as much as possible throughout the pregnancy. Our goal is to transfer care to our high-risk ob-gyn team only when we identify that the baby will need immediate cardiac care and imaging after birth and, therefore, will need to be delivered at The Mother Baby Center at Abbott Northwestern and Children’s Minnesota in Minneapolis. Children’s Minnesota is one of only a few centers nationwide with a birth center located within the hospital complex. This means that your baby will be born just a few feet down the hall from our newborn intensive care unit (NICU) and cardiovascular care center (CVCC).
How is congenital heart disease managed after birth?
Your baby’s postnatal treatment for congenital heart disease will depend on the type and seriousness of the heart defect. It will also depend on your baby’s overall health and whether he or she has any other birth defects. Many heart defects are mild and do not require any treatment. In other cases, medicines can be used to successfully manage the issue. Sometimes the treatment involves cardiac catherization, a non-surgical procedure in which a small, hollow tube (catheter) is threaded into the heart through an artery or vein (usually in a leg near the baby’s groin). The doctor then inserts various tools and devices through the catheter to repair the heart defect.
More severe heart defects require surgery. The type of surgical technique used will depend on the type of heart defect. Some children will need more than one surgery.
What is my baby’s prognosis?
The prognosis of babies born with congenital heart disease depends on the type of defect and whether the baby has other medical conditions. The spectrum of outcomes is vast. Thanks to medical advances, however, many children born with congenital heart disease grow up to live full, happy, and productive lives.
Will my baby require long-term follow up?
Most children born with congenital heart disease will need to be seen regularly by a cardiologist throughout their life.
Need a referral or more information? You or your provider can reach the Midwest Fetal Care Center at 855-693-3825. The fetal cardiology unit can be reached at 612-964-6344.