Preparing for your appointment

It's most likely that your child would be diagnosed with pulmonary atresia soon after birth while still in the hospital. If your child is diagnosed with pulmonary atresia, you'll be referred to a heart specialist (cardiologist) for ongoing care.

Because appointments can be brief, and because there's often a lot of ground to cover, it's a good idea to be prepared for your appointment. Here's some information to help you get ready for your appointment, and what to expect from your doctor.

What you can do

  • Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as fill out forms or restrict your child's diet. For some imaging tests, for example, your child may need to fast for a period of time beforehand.
  • Write down any symptoms your child has, including any that may seem unrelated to pulmonary atresia. Try to recall when they began. Be specific, such as days, weeks, months, and avoid vague terms such as "some time ago."
  • Write down key personal information, including a family history of heart defects, pulmonary hypertension, lung disease, heart disease, stroke, high blood pressure or diabetes, and any major stresses or recent life changes.
  • Make a list of all medications, as well as any vitamins or supplements that your child is taking. Also, be sure to tell your doctor if you've recently stopped taking any medications, or if you took any medications during pregnancy.
  • Take a family member or friend along, if possible. Sometimes it can be difficult to remember all the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
  • Write down questions to ask your child's doctor.

Your time with your doctor is limited, so preparing a list of questions will help you make the most of your time together. List your questions from most important to least important in case time runs out. For pulmonary atresia, some basic questions to ask your doctor include:

  • What are other possible causes for my child's symptoms or condition?
  • What kinds of tests will my child need?
  • What's the best treatment?
  • Are there any activities my child should avoid as he or she grows up?
  • How often should my child be screened for changes in his or her condition?
  • What are the alternatives to the primary approach that you're suggesting?
  • Could you recommend a specialist who has experience treating congenital heart defects?
  • Is there a generic alternative to the medicine you're prescribing?
  • Are there any brochures or other printed material that I can take home with me? What websites do you recommend?

In addition to the questions that you've prepared to ask your child's doctor, don't hesitate to ask other questions during your appointment if you don't understand something.

What to expect from your child's doctor

Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your child's doctor may ask:

  • Has anyone else in your family been diagnosed with pulmonary atresia or another heart defect?
  • Have your child's symptoms been continuous or occasional?
  • How severe are your child's symptoms?
  • What, if anything, seems to improve your child's symptoms?
  • What, if anything, appears to worsen your child's symptoms?
Dec. 02, 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.