by Kimberly Simon, RN, BSN
Fetal Heart Coordinator

The Heart Center at Primary Children’s Medical Center offers a Fetal Heart Program. We see pregnant mothers when there are concerns that the fetus may have a congenital heart defect or abnormal heart rhythm. We also see mothers that may have any of the following indications: a family history of congenital heart defects, metabolic disorders (diabetes), exposure to teratogens, autoimmune disease, rubella infection, or other concerns their obstetrician may have. Early fetal detection allows for important prenatal planning and education, and expedient management after delivery.

As the Fetal Heart Nurse Coordinator, I meet with families that receive a fetal diagnosis of a congenital heart defect or arrhythmia. When receiving this diagnosis, parents are often overwhelmed and worried. Most families have never heard of a congenital heart defect (CHD) and now their unborn child has been diagnosed with one.

When we meet with families, we have done a detailed fetal echocardiogram, which is an ultrasound of the fetus’ heart, and then a pediatric cardiologist, myself, and a social worker meet with the family in a consult room. The initial visit is filled with education about what defect was seen on the echo and what will occur during the remainder of the pregnancy. We see the families back for more echocardiograms and visits, so questions are answered and planning for delivery can take place. We also give our contact information to families so they can call with any questions or concerns.

There are many congenital heart defects and different pathways for each diagnosis, so conversations vary with each family. However, there are some general questions that are asked frequently during prenatal counseling.

Top 5 Prenatal Congenital Heart Defect Questions

1. What caused this? Is it something we did?

Parents automatically blame themselves for something they cannot control. Mothers think that may have done something wrong during the pregnancy to cause the problem, but majority of the time these defects just happen. Cardiologists often don’t know why congenital heart defects occur, but it is thought to be caused by a combination of genes and other risk factors - such as environmental exposures or maternal conditions.

Heredity may a play a role. A parent with a congenital heart defect has a slightly increased chance of having a baby with a CHD than the general population. If the fetus has a genetic disorder, such as Down syndrome, there is an increased chance of having a heart defect. Other factors that possibly play a role are maternal diabetes, some infections, maternal autoimmune disorders, exposure to teratogens, and in vitro fertilization.

2. Will it get better during the pregnancy?

Congenital heart defects occur when the heart is forming during the early stages of pregnancy. Since the heart forms in the early stages of pregnancy, the defect may occur before most women know they are pregnant. Once a major heart defect has occurred, it will not get better and can potentially get worse, which is why our patients have continued follow up through gestation.

3. Will the baby be safe during the remainder of the pregnancy?

Yes, for the majority of our babies they are just fine while in mom. There are fetal connections in the heart that supply the baby with the blood and oxygen he/she needs while in mom. In some cases, which are dependent on the diagnosis, the baby can become distressed and this can be seen by ultrasound by your OB or the pediatric cardiologist. These babies are monitored closely by all providers involved.

4. Can we fix this?

Some congenital heart defects are less severe than others and may not need surgical treatment. Other congenital heart defects can be more complex and may require several surgeries that are performed over a period of weeks or years. Surgery is not a cure for all heart defects. Many will need multiple surgeries and/ or medications throughout childhood and as adults. These babies will need to be seen by a pediatric cardiologist for their entire life.

5. How much will this cost?

This answer of course depends a lot on the type of health care coverage you have. Health insurance plans vary greatly. Becoming familiar with your plan will help you know what to expect financially. There are a lot of insurance terms you should become familiar with as you start to call and talk with your insurance. Primary Children’s has a handout called “Medical Finances” that is a great resource for you as you start this process. If you don’t have health care coverage or won’t have coverage for your baby, you should speak with a social worker to help you.

Hearing the news that your baby will be born with a congenital heart defect can be very overwhelming. Our Fetal Heart Team is here to help answer questions, provide emotional support, family support, and to provide the best care possible to the baby and the family.