Navigating life after infant open-heart surgery: A guide for parents

When your child needs open-heart surgery, we know it can feel overwhelming. You might have questions about how to proceed or what to expect after infant open-heart surgery. With expertise provided by cardiovascular surgery nurse practitioner at Riley Children's Health, Melinda Christian, RN, MSN, C-PNP, she walks you through essential information, practical tips and all the support you need to help you confidently navigate life afterward.

Open heart surgery on an infant

Open-heart surgery is a procedure often correcting congenital heart defects. During a pediatric heart surgery, the surgeon makes a cut through the breastbone or the side of the chest in order to repair the heart and improve symptoms. The surgeon will place medical lines and wires on your child, as well as a chest tube, to support the surgery. Once the procedure is performed, the immediate and long-term steps play a crucial role to your child’s recovery and overall health.

Immediate recovery period

Immediately after cardiac surgery, your child will likely remain in an intensive care unit (ICU) for the first few days or longer. At this time, your child’s medical team will focus on stabilizing your child, ensuring their heart is functioning properly and making them feel comfortable. Other factors to expect might include:

• Pain management. Your child’s medical team will give your child medications immediately to help manage pain.
• Physical discomfort. Your child may experience symptoms such as nausea, vomiting, swelling, cough or general weakness. Medications and therapies such as child life and physical therapy can work to prevent these discomforts.

Over the first few days of recovery, your medical providers will slowly remove lines and tubes when it is safe. When your child has recovered enough, they will be transferred to the heart center to prepare for home.

Once it is medically safe for discharge, your medical team will ensure your child can return home comfortably. First, you will receive detailed instructions on proper at-home care. Additionally, you will schedule a virtual follow-up appointment the week following your discharge, as well as an in-person follow-up appointment, often 2 – 4 weeks after leaving the hospital. Your care team will also recommend timing on when your child can return to school or daycare.

Transition to home and daily life

Once at home, it’s essential to create a safe environment for your child’s recovery. Here are at-home care guidelines to remember:

• Activity restriction. For six weeks, lift your child under their bottom, not under the arms, to avoid pressure on their chest. They should stay away from activities like heavy lifting, bike riding, swimming and wrestling. Gentle play such as crawling and rolling is safe, as long as they are not fussy.
• Wound care. The surgical cut will be protected by bandages. Once these have fallen off or have been removed, gently clean the area during a shower or sponge bath but avoid submerging in the water. Wash the wound with mild soap and pat dry. Avoid putting creams and ointments on the wound until fully healed.
• Medication. Follow the provided instructions for giving medications to your kid on time. Being consistent with this helps manage pain and prevent complications.
• Transportation. When placing your child in a vehicle, do not place any extra padding between them and the seatbelt/harness.
• Feeding and nutrition. While you may notice a decreased appetite after heart surgery, most children can resume a regular, healthy diet. Your provider can guide you on a proper feeding plan.
• Recognizing complications. Watch for signs like unrelieved pain, unusual coughing or increased swelling around the surgical cut. If you recognize these symptoms, contact your medical provider immediately.
• Emotional and development support. Post-surgery stress is normal for both you and your child. As you manage your child’s recovery, lean on your support system, and take time for yourself to release any emotions.

Additional follow-up care and recovery

The road to full recovery continues long after your child leaves the hospital, but these additional steps can ensure your child’s long-term recovery is progressing nicely:

• Physical rehabilitation. Rehabilitation programs designed for infants can gradually increase activity levels and improve strength and mobility. Your healthcare provider can recommend appropriate programs based on your child’s needs.
• Regular check-ups. Routine appointments are important for monitoring your child’s progress. These visits may involve imaging tests to continue checking heart function.
• Future intervention. Some children may require additional care and surgeries as they grow. Stay informed during your follow-up visits to prepare for any future needs.

When navigating life after open-heart surgery, having the right support and resources will be essential to your child’s overall health. As you continue the post-surgical journey, talk with your child about their progress and achievements, and recognize their strength along the way. With patience and time, a return to normalcy is ahead. And as always, our multidisciplinary specialists at Riley Children's are here for your every need, ready to help you and your child thrive after pediatric heart surgery.

At Riley Children’s, our CV surgery team provides exceptional care for families dealing with heart defects, offering advanced expertise to improve your child’s health. For more, explore the Riley Heart Surgery Family Guidebook or read about a recent CV patient. Additionally, learn more about how you can manage your child’s congenital heart condition.