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When Your Child was in the Hospital
Your child had surgery to repair a heart defect. If your child had open-heart surgery, a surgical cut was made through the breastbone or the side of the chest. The child also may have been put on a heart-lung bypass machine during surgery.
After the surgery, your child was probably in the intensive care unit (ICU) and then in another part of the hospital.
What to Expect at Home
Your child will need at least 3 or 4 more weeks at home to recover. For larger surgeries, recovery may take 6 to 8 weeks. Talk with your child's health care provider about when your child can return to school, daycare, or take part in sports.
Pain after surgery is normal. There may be more pain after closed-heart surgery than after open-heart surgery. This is because nerves may have been irritated or cut. The pain will likely decrease after the second day and can sometimes be managed with acetaminophen (Tylenol).
Many children behave differently after heart surgery. They may be clingy, irritable, wet the bed, or cry. They may do these things even if they were not doing them before their surgery. Support your child through this time. Slowly begin to set the limits that were in place before the surgery.
For an infant, keep the child from crying for too long for the first 3 to 4 weeks. You can calm your child by staying calm yourself. When lifting your child, support both the child's head and bottom for the first 4 to 6 weeks.
Toddlers and older children will often stop any activity if they become tired.
The provider will tell you when it is OK for your child to return to school or daycare.
- Most often, the first few weeks after surgery should be a time to rest.
- After the first follow-up visit, the provider will tell you what your child can do.
For the first 4 weeks after surgery, your child should not do any activity that could result in a fall or a blow to the chest. Your child should also avoid bicycle or skateboard riding, roller skating, swimming, and all contact sports until the provider says it is OK.
Children who have had an incision through the breastbone need to be careful about how they use their arms and upper bodies for the first 6 to 8 weeks.
- DO NOT pull or lift the child by the arms or from their armpit area. Scoop the child up instead.
- Prevent your child from doing any activities that involve pulling or pushing with the arms.
- Try to keep your child from lifting the arms above the head.
- Your child should not lift anything heavier than 5 pounds (2 kg).
Keep a close eye on your child's diet to make sure they get enough calories to heal and grow.
After heart surgery, most babies and infants (younger than 12 to 15 months) can take as much formula or breast milk as they want. In some cases, the doctor may want your baby to avoid drinking too much formula or breast milk. Limit feeding time to around 30 minutes. Your child's provider will tell you how to add extra calories to formula if it is necessary.
Toddlers and older children should be given a regular, healthy diet. The provider will tell you how to improve the child's diet after surgery.
Ask your child's provider if you have any questions about your child's nutrition.
Your provider will instruct you on how to care for the incisions. Look at the wound for signs of infection, such as redness, swelling, tenderness, warmth, or drainage.
Your child should take only a shower or a sponge bath until your provider says otherwise. Steri-Strips should not be soaked in water. They will begin to peel off after the first week. It is OK to remove them when they start to peel off.
For as long as the scar looks pink, make sure it is covered with clothing or a bandage when your child is in the sun.
Ask your child's provider before getting any immunizations for 2 to 3 months after surgery. Afterward, your child should have a flu shot every year.
Many children who have had heart surgery must take antibiotics before, and sometimes after, having any dental work. Make sure you have clear instructions from your child's heart provider about when your child needs antibiotics. It is still very important to have your child's teeth cleaned regularly.
Your child may need to take medicine when sent home. These may include diuretics (water pills) and other heart medicines. Be sure to give your child the correct dosage. Follow up with your provider 1 to 2 weeks after the child leaves the hospital or as instructed.
When to Call the Doctor
Call the provider if your child has:
- Fever, nausea, or vomiting
- Chest pain, or other pain
- Redness, swelling, or drainage from the wound
- Difficulty breathing or shortness of breath
- Puffy eyes or face
- Tiredness all the time
- Bluish or grayish skin
- Dizziness, fainting, or heart palpitations
- Feeding problems or reduced appetite
Bernstein D. General principles of treatment of congenital heart disease. In: Kliegman RM, Stanton BF, St Geme JW, Schor NF, eds. Nelson Textbook of Pediatrics. 20th ed. Philadelphia, PA: Elsevier; 2016:chap 434.
Fraser CD, Kane LC. Congenital heart disease. In: Townsend CM Jr, Beauchamp RD, Evers BM, Mattox KL, eds. Sabiston Textbook of Surgery. 20th ed. Philadelphia, PA: Elsevier Saunders; 2017:chap 58.
Marino BS, Lipkin PH, Newburger JW, Peacock G, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation. 2012; 28:126(9):1143-1172. PMID: 22851541 www.ncbi.nlm.nih.gov/pubmed/22851541.
Recommendations for preparing children and adolescents for invasive cardiac procedures: a statement from the American Heart Association Pediatric Nursing Subcommittee of the Council on Cardiovascular Nursing in collaboration with the Council on Cardiovascular Diseases of the Young. Circulation. 2003;108(20):2250-2564. PMID: 14623793 www.ncbi.nlm.nih.gov/pubmed/14623793.