Fetal heart conditions: What to expect when your unborn baby is diagnosed with a heart problem

The last thing expecting parents want to hear is that their baby may have a health problem. However, if your baby is diagnosed with a heart problem in the womb, our team at Children's Health℠ is here for you every step of the way.

Catherine Ikemba, MD, Director of the Fetal Heart Program at Children's Health, and Jenna Keelan, MD, Pediatric Cardiologist and Co-director of Fetal Cardiology Education, shared answers to common questions families have when their unborn baby is diagnosed with congenital heart disease.

"Many parents wonder if their child will have a long, healthy life, or if they will be limited by their congenital heart disease," Dr. Keelan says. "Each patient is different but we can walk families through what we typically expect for a child with their diagnosis. Many of these kids grow up to lead active, productive lives."

Related podcast
Learn more about what to expect when your unborn baby is diagnosed with a heart problem by listening to the Children’s Health Checkup podcast.

When would I be referred to a fetal cardiologist?

Problems with a baby's heart are often first detected on a routine ultrasound that examines their anatomy at around 20 weeks of pregnancy. When OB/GYN's detect a possible heart problem during a routine ultrasound, they'll refer you for a fetal echocardiogram. A fetal echocardiogram takes detailed pictures of the heart to understand if your baby may be born with a heart problem.

"Eighteen weeks gestation is the earliest we would do a fetal echocardiogram, but the ideal time is 22 to 26 weeks," Dr. Ikemba says. "At this point, the heart is fully formed and typically large enough for us to get a good sense of what's going on."

Why would I be referred to a fetal cardiologist?

Some people may be referred to a fetal cardiologist because they have an increased risk of having a baby with a heart problem. This includes:

• If the mother has health conditions like diabetes, lupus or Sjogren's disease which can sometimes affect the baby's heart development or heart rhythm.
• If there is a family history of congenital heart problems.
• If your unborn baby has been diagnosed with a genetic syndrome like Down syndrome, which can increase the risk of having a congenital heart defect.

Your OB/GYN may also refer you if:

• They cannot see the heart well or suspect a problem on a routine ultrasound.
• They find a problem in other organs and want to make sure that the heart is okay.
• There is a fetal heart rhythm abnormality (too fast, to slow or irregular heartbeats).

How common are congenital heart defects?

Congenital heart defects happen in about 1 of every 100 pregnancies.

"There are many different types of congenital heart defects and not all of them are serious," Dr. Keelan says. "For example, some holes in the heart close on their own without any treatment. Other conditions may require several surgeries early in a child's life."

Common congenital heart defects

• Ventricular septal defect (VSD)
• Pulmonary stenosis
• Tetralogy of Fallot (TOF)
• Double outlet right ventricle (DORV)
• Atrioventricular cushion defect (AVSD)
• Anomalous pulmonary venous return
• Common arterial trunk (Truncus arteriosus)
• Coarctation of the aorta (CoA)
• Transposition of the great arteries (TGA)
• Aortic stenosis
• Single ventricle (Hypoplastic left heart syndrome, tricuspid atresia, and many more)

What causes congenital heart defects?

Most of the time, there is no clear reason why a baby has a congenital heart defect. Sometimes, these heart problems are related to genetic syndromes like Down syndrome. About half of children with Down syndrome have a congenital heart defect.

"Most congenital heart defects just happen. It is not your fault. It is nothing you did or didn't do, nor eat or didn't eat," Dr. Ikemba says.

What to expect during your fetal cardiology appointment

Before the fetal echocardiogram

You don't need to do anything to prepare for your fetal cardiology appointment. Bringing a close friend or family member can be helpful so you have someone to listen and learn with you.

First, you meet the nurse coordinator who asks questions about your pregnancy, fetal testing, family history and medications.

During the fetal echocardiogram

The scan will feel similar to your routine ultrasounds. Either a sonographer (a person who performs ultrasounds) or a senior cardiology fellow will do the scan, while the cardiologist looks closely at the images.

A fetal echocardiogram may take up to 45-60 minutes depending on the position of the baby and the complexity of the scan.

"Families are often surprised that this takes longer than a typical ultrasound," Dr. Keelan says. "But that's just how long it takes to get all the pictures we need."

After your fetal echocardiogram

After the scan, you go to the consultation room with your pediatric cardiologist who shares your results with you utilizing diagrams and answers any questions you may have.

Your doctor will explain that there are some technical limitations to the scan because of the small size of the heart and also because the blood flows differently in the fetus than it does after birth.

"We can't always make out the very fine details and there's a chance that your child may have some small abnormality," Dr. Keelan says. "But a normal scan rules out the serious congenital heart diseases. If, after a baby is born, a pediatrician hears a heart murmur or has some other concern, we're happy to see them again."

If we do find an abnormality, our cardiologists will explain exactly what they found and what that means for your child. This includes discussing:

• What the condition is
• What you and your child's medical needs will look like moving forward
• Next steps, such as whether you may want to meet with a surgeon or other specialist
• Whether you can deliver at any hospital or if you'll need to deliver somewhere with expertise caring for children with congenital heart disease
• How a heart condition may impact your child's overall health
• Medications and or procedures your child may need as they grow up
• Any other questions or concerns you may have

What kind of treatments are available for congenital heart disease?

Your child's treatment depends on the diagnosis. Children's Health offers the latest treatments for all types of congenital heart disease shortly after birth and as the child grows up. These include:

• Cardiology outpatient clinic: Most children with VSDs (holes in the heart) do not need treatment right away. Many holes in the heart close spontaneously over time. Sometimes medications can be helpful. Occasionally, treatments like cardiac catheterization or surgery may be required for some holes that do not close on its own.
• Cardiac catheterization: In this treatment, doctors feed a long, thin tube through a vein or artery and use it to fix problems in the heart.
• Surgery: Some children require one or more surgeries to fix heart problems and/or help the heart pump blood effectively.
• Medicines and pacemakers: We use these treatments for babies that have heart rhythm problems.
• Palliative care: Families of children with serious congenital heart disease may work with our palliative care team to help navigate complex decisions about their child's care.

What resources would you recommend for families expecting a baby with congenital heart disease?

Support groups and nonprofits focused on congenital heart disease can be great resources for families. The Children's Health Heart Center also has an amazing team of social workers and psychologists who support our families along their journey.

"I've been doing this for 20 years and know what it looks like from a medical perspective, but talking to another family who's been through this journey is invaluable," Dr. Ikemba says.

The Children's Health team recommends the following groups and resources:

• Mended Little Hearts: A support program for parents of children with heart defects and heart disease.
• Conquering CHD: A group dedicated to the needs of congenital heart disease patients through awareness, advocacy, knowledge, community and research.
• Children's Cardiomyopathy Foundation: A group committed to assisting children with cardiomyopathy and their families.
• Enduring Hearts: A non-profit organization dedicated to improving the lives of children with transplanted hearts.
• Sisters by Heart: A group who provides support, education and empowerment to patients and families affected by Hypoplastic Left Heart Syndrome (HLHS), and other single ventricle (SV) defects, from initial diagnosis to the Fontan and beyond.
• Children's Heart Foundation: A group dedicated to advancing the diagnosis, treatment and prevention of congenital heart defects by funding the most promising research.
• Postpartum Support International (PSI): An organization that increases awareness about the emotional changes that women experience during pregnancy and postpartum.
• National Maternal Mental Health Hotline: A free, 24/7 hotline for support and resources during pregnancy and postpartum. 1-833-TLC-MAMA (1-833-852-6262)

Learn more

If you have been referred for a fetal echocardiogram or have received a fetal heart diagnosis, our team is here for you every step of the way. Learn more about the Fetal Heart Program at Children's Health.