February 3, 2021
Pregnancy can often be a roller coaster of emotions for families, especially for mom. There’s the excitement of welcoming a new baby, but for some, fear and anxiety set in around the 20-week appointment. This is when your OB performs an anatomy scan. They scan the baby from head to toe via an ultrasound, and some families (about 1% of all pregnancies) find out there may be a problem with the heart, which is called a congenital heart defect or CHD.
CHD refers to defects in the heart or blood vessels around the heart that don’t develop normally, ultimately affecting blood flow, breathing, activity levels and feeding. While genetics, diet, environmental factors or all the above can be a cause for heart defects in unborn babies, often there’s no known reason why some babies are more at risk of heart defects than others.
While some expectant moms get genetic tests done around the 12-week mark to identify any issues, the 20-week pregnancy appointment takes a closer look at the heart’s four chambers and surrounding vessels, picking up roughly 85 percent of heart disease and abnormalities, says Michael Puchalski, M.D., medical director of pediatric cardiology and co-director of the Johns Hopkins All Children’s Heart Institute.
“As parents, when you hear ‘there might be a problem’ in this visit, there can be a lot of anxiety, and information can be hard to process,” Dr. Puchalski says. “Our suggestion is to get seen as soon as possible by a fetal cardiologist to learn more about your baby’s condition. It’s important to know the facts and also understand that many babies can do well after being born with CHD.”
Johns Hopkins All Children’s Fetal Heart program brings together a team of experts who meet with families early on to diagnose CHD, discuss potential surgical interventions after birth, review delivery options and help coordinate care both before and after birth. Delivery at a specialty center like Johns Hopkins All Children’s allows mom and baby to be in the same hospital, decreasing the time to optimal care and providing the best possible outcomes. Programs like this treat a wide variety of heart conditions and help families learn about CHD and how to care for them, including some of the most common defects:
Dr. Puchalski encourages families to talk to experts, educate themselves and start planning early on in pregnancy. You’ll need to ask your provider questions about whether your baby’s heart defect requires you to deliver somewhere that specializes in these births and has a dedicated cardiovascular ICU in case your baby needs special care right away. Families should also mentally prepare for challenges along the way, such as feeding issues and developmental delays, as well as the need for cardiology care early on and likely through their whole life.
“Heart defects are not a limitation,” adds Dr. Puchalski. “It’s amazing what we know now and what interventions we can use to not only to help these babies and children live a normal life, but excel and improve their overall quality of life.”
For more information, visit HopkinsAllChildrens.org/Heart
*Photos provided by Johns Hopkins All Children’s Hospital