Self-management

Lifestyle and home remedies

If your baby is born with pulmonary atresia, it may seem that almost all your time is spent at the hospital or at a doctor's office. But there will be time spent at home, as well. Here are some tips for caring for your child at home:

  • Strive for good nutrition. Your baby may have a difficult time taking in enough calories, both because he or she tires more easily during feeding and because of an increased demand for calories. It's often helpful to give your baby frequent, small feedings.
  • Preventive antibiotics. Your child's cardiologist will likely recommend that your child take preventive antibiotics before certain dental and other procedures to prevent bacteria from entering the bloodstream and infecting the inner lining of the heart (infective endocarditis). Practicing good oral hygiene — brushing and flossing teeth, getting regular dental checkups — is another good way of preventing infection.
  • Help your child stay active. Encourage as much normal play and activity as your child is able to tolerate, with ample opportunity for rest and nap time. Staying active helps your child's heart stay fit. As your child grows, talk with the cardiologist about which activities are best for your child. If some are off-limits, such as competitive sports, encourage your child in other pursuits rather than focusing on what he or she can't do.
  • Keep up with routine well-child care. Standard immunizations are encouraged for children with congenital heart defects, as well as vaccines against the flu, pneumonia and respiratory syncytial virus infections.
  • Keep regular follow-up appointments with your child's doctor. Your child may need regular annual appointments with his or her doctor trained in congenital heart conditions, even throughout his or her adult life.

Coping and support

It's natural for many parents to feel worried about their child's health, even after treatment of a congenital heart defect. Although many children who have congenital heart defects can do the same things children without heart defects can, here are a few things to keep in mind if your child has a congenital heart defect:

  • Developmental difficulties. Because some children who have congenital heart defects may have had a long recovery time from surgeries or procedures, they may developmentally lag behind other children their age. Some children's difficulties may last into their school years, and they may have difficulties learning to read or write, as well. Talk to your child's doctor about ways to help your child through his or her developmental difficulties.
  • Emotional difficulties. Many children who have developmental difficulties may feel insecure about their abilities and may have emotional difficulties as they reach school age. Talk to your child's doctor about ways you can help your child cope with these problems, which may include support groups for parents, or a visit to a therapist or psychologist for your child.
  • Support groups. Having a child with a serious medical problem isn't easy and, depending on the severity of the defect, may be very difficult and frightening. You may find that talking with other parents who've been through the same situation brings you comfort and encouragement. Ask your child's doctor if there are any local support groups.

Prevention

Because the exact cause of pulmonary atresia is unknown, it may not be possible to prevent it. However, there are some things you can do that might reduce your child's overall risk of congenital heart defects, such as:

  • Get a German measles (Rubella) vaccine. If you develop German measles during pregnancy, it may affect your baby's heart development. Being vaccinated before you try to conceive likely eliminates this risk.
  • Control chronic medical conditions. If you have diabetes, keeping your blood sugar in check can reduce the risk of heart defects. If you have other chronic conditions, such as epilepsy, that require the use of medications, discuss the risks and benefits of these drugs with your doctor.
  • Don't smoke or drink. Smoking cigarettes and drinking alcohol during pregnancy may increase the risk of heart defects in your baby.
Jan. 31, 2016
References
  1. Facts about pulmonary atresia. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/heartdefects/pulmonaryatresia.html. Accessed Oct. 28, 2015.
  2. Single ventricle defects. American Heart Association. http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/Single-Ventricle-Defects_UCM_307037_Article.jsp#.VjE3ztiFOic. Accessed Oct. 28, 2015.
  3. Axelrod DM, et al. Pulmonary atresia with intact ventricular septum (PA/IVS). http://www.uptodate.com/home. Accessed Oct. 28, 2015.
  4. Congenital heart defects. National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/health-topics/topics/chd#. Accessed Oct. 29, 2015.
  5. Congenital heart defects: Tracking and research. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/heartdefects/research.html. Accessed Nov. 20, 2015.
  6. Congenital heart defects and CCHD. March of Dimes. http://www.marchofdimes.org/baby/congenital-heart-defects.aspx. Accessed Nov. 20, 2015.
  7. Isotretinoin and other retinoids during pregnancy. March of Dimes. http://www.marchofdimes.org/pregnancy/isotretinoin-and-other-retinoids-during-pregnancy.aspx. Accessed Nov. 20, 2015.
  8. Perloff JK, et al. Pulmonary atresia with intact ventricular septum. In: Perloff's Clinical Recognition of Congenital Heart Disease. 6th ed. Philadelphia, Pa.: Saunders Elsevier; 2012. http://www.clinicalkey.com. Accessed Nov. 23, 2015.
  9. Kouchoukos NT, et al. Pulmonary atresia and intact ventricular septum. In: Kirklin/Barratt-Boyles Cardiac Surgery. 4th ed. Philadelphia, Pa.: Saunders Elsevier; 2013. http://www.clinicalkey.com. Accessed Nov. 23, 2015.
  10. Geggel RL. Diagnosis and initial management of cyanotic heart disease in the newborn. http://www.uptodate.com/home. Accessed Nov. 23, 2015.
  11. Park MK. Cyanotic congenital heart defects. In: Pediatric Cardiology for Practitioners. 6th ed. Philadelphia, Pa.: Mosby Elsevier; 2014. http://www.clinicalkey.com. Accessed Nov. 23, 2015.
  12. Hay WW, et al. Cardiovascular diseases. In: Current Diagnosis & Treatment: Pediatrics. 22nd ed. New York, N.Y.: McGraw-Hill Education; 2014. http://www.accessmedicine.com. Accessed Nov. 25, 2015.
  13. Your child's special needs. American Heart Association. http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/CongenitalHeartDefectsToolsResources/Web-Booklet-If-Your-Child-Has-a-Congenital-Heart-Defect_UCM_316608_Article.jsp#.VlYG3diFOic. Accessed Nov. 25, 2015.
  14. Riggen EA. Allscripts EPSi. Mayo Clinic, Rochester, Minn. Oct. 20, 2015.
  15. Taggart NW (expert opinion). Mayo Clinic, Rochester, Minn. Jan. 6, 2016.