Fetal Congenital Heart Disease

What is Fetal Congenital Heart Disease?

Fetal Congenital Heart Disease (Fetal CHD) is a wide-ranging diagnosis that refers to an abnormality in the structure or function of the heart before birth.

Congenital heart disease is diagnosed and treated in all phases of life. Fetal CHD, discovered during pregnancy, can be considered:

Relatively Minor: This includes CHD cases that will resolve on their own and those that may or may not need surgical repair after birth.
Surgically Correctable: While there are major structural issues, a normal heart structure can be achieved through surgery—either immediately after birth or later during childhood.
Palliate: In these cases, surgery can be used improve heart function but cannot fully fix the structural issues affecting your baby’s heart. This surgery can happen after delivery or later in childhood.
Functional Heart Disease: The structure of the heart is normal, but there are problems with cardiac function (how well the heart squeezes) or rhythm (too fast, too slow, or abnormal patterns). This may require treatment before or after birth through medication or electrical therapy (like a pacemaker).

What causes Fetal Congenital Heart Disease?

If you or a loved one has heart disease and is considering pregnancy or is pregnant—specialized care may be needed. This includes people with prior repair of heart defect, ongoing heart disease, and those taking cardiac medications.

Potential causes or risk factors for CHD include:

Pregnancies complicated by diabetes
Lupus
Twins or multiples
In vitro fertilization (IVF)
Certain medications may be at increased risk

By the Numbers

~500

Patients Evaluated by Maternal-Fetal Medicine Whose Babies Have a Form of Congenital Heart Disease

5000+

Pediatric Echocardiograms Performed Annually by the Children's Heart Center

300+

Open-Heart Surgeries Performed by the Pediatric Cardiology Surgery Team Each Year

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UR Medicine's Treatments for Fetal Congenital Heart Disease

The Children’s Heart Center at Golisano Children's Hospital cares for infants and children with cardiac disease at every stage of life. Many infants born with milder forms of cardiac disease can go home with plans for follow-up visits with Pediatric Cardiology and, if needed, surgery later in childhood. Some infants with CHD will need care through pregnancy, in our Level IV NICU, and then in the Pediatric ICU after surgery.

Pregnant mothers at risk of bearing a child with congenital heart disease are evaluated by UR Medicine’s Pediatric Cardiologists, all of whom have extensive experience in the diagnosis and management of fetal heart disease.

As part of your evaluation for CHD, we will complete a Level II ultrasound screening for other structural concerns your baby may have. In addition, our onsite Pediatric Echocardiography Lab enables your unborn child to benefit from the most advanced cardiac imaging technology currently available.

If CHD is discovered, you and your baby will be treated by our Fetal Cardiology Team. A pediatric cardiologist, advanced practice nurse, and social worker will take a coordinated approach to your care. Your delivery will be planned in partnership with specialists from perinatology, neonatology and pediatric cardiothoracic surgery, if needed.

You will also be offered the opportunity to meet with our genetic counselors and review your individual and family history. You may be offered genetic testing.

For more complicated diagnoses that require intervention or surgery shortly after birth, UR Medicine’s NICU team admits and cares for infants until their transition to the Pediatric Cardiac Care Center.

What Sets Us Apart?

UR Medicine Maternal-Fetal Care team is the only integrated cardio-obstetrics team in Western New York. This comprehensive team of specialists includes adult congenital heart disease specialists, adult cardiology, cardiac intervention teams, and cardiac anesthesia teams. In the last five years, UR Medicine Maternal-Fetal Care has seen almost 500 women whose babies have some form of congenital heart disease.

Our Pediatric Cardiologists are world-class subspecialists with expertise in diagnosing and treating rare congenital heart defects. UR Medicine’s Children's Heart Center offers the only pediatric catheterization laboratory in Western New York equipped to perform the most specialized procedures on children and adults with congenital heart disease. Previously, families from the greater Rochester area had to drive to Cleveland or Boston for this type of service.

Additionally, our Pediatric Cardiology Surgery team performs more than 300 open-heart surgeries annually. This is the only team in upstate New York to offer complex pediatric cardiac repairs.

The Pediatric Cardiac Consortium of Upstate New York reviews and discusses each cardiac child with complex heart disease in the upstate region. Golisano Children's Hospital cares for some of the highest-risk infants and children in the state, with survival rates and outcomes that exceed expected rates for the complexity of cases. Our team has the second lowest mortality rates for congenital cardiac surgery in the state.

Our team offers a full range of options for evaluation of your baby including Level II fetal ultrasound, fetal echocardiography, and fetal MRI. UR Medicine also offers the region’s only fetal MRI center, to help evaluate many complex fetal conditions and placenta abnormalities.

UR Medicine’s ultrasound unit is certified by the American Institute of Ultrasound in Medicine to perform Level 2 ultrasounds, a more in-depth evaluation. Our experienced Registered Diagnostic Medical Sonographers and state-of-the-art equipment, including 3D/4D capabilities, help diagnose your developing baby with even more precision.

When you are facing a pregnancy with a complex condition, just making all the needed appointments can be overwhelming. As part of our care, our Maternal Fetal-Care Medicine coordinators will ensure you receive all the information and support you need before and during delivery.

These care specialists can help with: