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 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.
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. View Penn's Beautiful Heart Story transcript.
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 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.
What to Expect: 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.
At UVA 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 slow 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.
What to Expect: 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.
You can use MyChart to message your care team with questions and concerns. Use MyChart online or via the app to schedule appointments, see test results, and even for virtual visits.
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:
- COVID-19 procedures
- The hospital admission process
- What to bring
- Lodging options
What to Expect: 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
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.
What to Expect: 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:
- 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.
Care That Grows With Your Child
As an adult, your child will still need care from a congenital heart specialist. Our special clinic for adults with congenital heart conditions offers a seamless transition. Your child can always get the care they need at UVA.