Congenital Heart Defects: A Parent Guide
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Finding out your baby has a heart condition and needs surgery can be overwhelming. You may have learned your baby will be born with a congenital heart defect. Or you learned about their heart condition after giving birth. Either way, you have lots of questions. How do you prepare for a child who will need pediatric heart surgery?
You don’t have to do it alone. At UVA Health Children’s, we’re here for you during this uncertain time. We offer expert treatment for congenital heart defects and a host of support services. We’ll help you understand all the steps in your baby’s care.
Giving Birth to a Baby with a CHD
You can deliver on time. But you'll need to choose a hospital with special after-birth care.
Your Delivery Date
Giving birth to a baby with a congenital heart defect is similar in many ways to giving birth to a child without a heart condition. You can birth your baby on the same timeline you expected from the beginning. You won’t have to deliver early or have a C-section because of your child’s heart condition.
The Hospital You Choose
Where you have your baby matters. A baby born with a heart defect will need immediate care at birth.
At UVA Health Children’s, we have specialists onsite who can care for all your baby’s needs. We can make a plan with you for a safe delivery. We also offer the special care and monitoring your baby will need before, during, and after surgery.
Penn's Beautiful Heart Story
Penn's heart didn't fully develop as a baby. But today, it's a normal size, thanks to a procedure that opened her right ventricle. Watch Penn's parents tell her story.
Jen Stiffler: So my husband Shawn and I, we have three kids-- Wade, Scout, and Penn. Both of our little girls were born with undiagnosed congenital heart defects.
Shawn Stiffler: I just happened to be at work one day, and she had mentioned that Scout had an ear infection and she was taking her into the doctor's. Then I got a text message saying, you better get over here. The surgery that she was going to require had only been done at that point, I believe, one or two times on a child as small as her in the country.
Peter Dean, MD: Scout didn't have a problem with kind of the plumbing of her heart. She had a problem with the electricity of her heart causing her to have a bad heart rhythm. So she was cared for by our neonatology team along with our heart rhythm specialist, Dr. George McDaniel. We were able to give her various medicines to stabilize her blood pressures and her heart rates and get it under control.
Jen: The night before the surgery, at 11:00 PM, she flipped into normal rhythm. And she's been cleared now at age six of any heart condition, and I'm just forever grateful.
Jen: So we had our third, and her name is Penn. And she was our second to be born with an undiagnosed congenital heart defect, and hers was much more serious than Scout's.
G. Thomas Albrecht, MD: The right side of her heart did not develop prenatally, and there was some real discussion as to what kind of outcome she would have.
Jen: They said, what hospital would you like to go to? And my husband and I both said, immediately, UVA.
Shawn: We pulled into the emergency room, got into the ICU. I kind of felt like, phew, everything's going to be OK.
Jen: There was one doctor, Dr. Peter Dean, who thought that there was a possibility that, if we did this cath procedure, that they could balloon open her right ventricle. So if we could get blood flow into the heart, there was a chance that we could give her enough time to have her heart grow.
Dean: Dr. Hainstock is our interventional cardiologist who was able to perform a cath a few days later. Fortunately, it all went very well, and we were pleased with the outcomes. And fortunately, her right ventricle has kind of continued to grow.
Jen: It worked. It worked beautifully. We were told, on year two, that she does not need her other two open-heart surgeries. Her heart has grown to normal size because of that cath procedure. It has been the most incredible experience. They took something that is so scary-- it's your worst nightmare as a parent-- and they made us feel comfortable and capable.
Right After Birth
After birth, we'll care for your baby in our nationally ranked NICU. Our care team has extensive experience caring for sick infants, including those with congenital heart defects. You'll get the support you need from our family-centered approach.
Learn About Our NICUWhat Tests Will Your Baby Need?
At UVA Health Children’s, we have all the equipment and offer all the tests needed to make sure we find any problems as early as possible. This is important for keeping your baby as healthy and comfortable as possible before their surgery. Your baby may need the following tests.
Pulse Oximetry: Oxygen in the Blood
The pulse oximetry test measures the amount of oxygen in your baby’s blood. Every newborn in Virginia gets this test, but it’s especially important for babies with heart conditions. Newborns with heart problems often have a lower percentage of oxygen. This test uses light and does not hurt.
If your child does have a critical heart condition, we may send a pulse oximeter home with you to watch your baby’s oxygen levels.
Electrocardiogram or EKG: Heart Rhythm
An electrocardiogram tests your baby’s heart rate. It can tell if all the chambers of your baby's heart beat together. A heart that beats too slowly can stop enough blood from flowing. Other rhythm problems can damage the heart. This painless screening takes about 10 seconds.
Echocardiogram: Getting the Whole Picture
An echocardiogram (echo) takes 3D pictures of your baby’s heart. It uses sound waves to map your baby’s heart structures and blood flow. We can use it to diagnose a CHD and to figure out the best treatment. Like an ultrasound, an echocardiogram doesn't hurt.
See how we've customized radiology for children.
Going Home From the NICU
After you go home from the hospital, we’ll stay in contact with you to make sure your baby remains as healthy as possible.
Before you go home, be sure to talk with your care team about:
- Medications & immunizations
- Nutrition & exercise
- Feeding tube
- Weight gain
- Neurodevelopmental delays
Virtual, 24/7 Care
Once your baby goes home, our team will continue to support you and help you keep your baby well. You can easily keep your UVA medical team up to date with your child’s vital signs through our Building Hope app. Using an iPad, you can securely and instantly send us important information, like your child’s oxygen levels. Developed at UVA, this app helps babies leave the hospital days, even weeks, earlier than typical.
Returning for Pediatric Heart Surgery
With most congenital heart defects, your baby will need surgery. Usually this happens in the first year of birth. Sometimes more procedures will need to happen later on.
It's a lot to think about. Visit our guide to your child’s hospital stay to learn about:
- The hospital admission process
- What to bring
- Lodging options
Find directions, parking, and amenities.
Learn more about surgery for children at UVA Health Children's, including anesthesiology for children.
Managing the Details
Support for Your Child and Family
We understand getting treatment for your child’s heart condition can be stressful. We offer a host of support services for your child and family. Learn more about support from:
Paying for Treatment
For questions about treatments costs and billing, visit our guide to billing and insurance. We're happy to offer price estimates.
If you have trouble paying for your child’s care, learn more about financial aid.
Children’s Heart Family Fund
Many families travel a long distance for their child’s heart care. We can help relieve the added stress of these costs. You can get help with lodging, gas, and food expenses through our Children’s Heart Family Fund.
As Your Child Grows
Every baby we treat has the potential to recover and live a full life. Your child will still need care from a pediatric heart doctor to make sure they stay healthy. This specialist will help with:
- Vaccines
- Facing other kinds of surgeries
- Treatment for extreme illness
This doesn't mean your child will need constant medical attention. It just means that we'll take extra care with your child's health. This way we can prevent damage and keep your kid as safe as possible.
See more about our pediatric heart center.