It's most likely that your child would be diagnosed with pulmonary atresia soon after birth while still in the hospital. However, if your baby begins to show symptoms of pulmonary atresia, such as blue- or gray-toned skin, you should seek emergency medical attention. While it's unlikely your baby would be diagnosed with pulmonary atresia outside of the first few days of life, symptoms such as cyanosis or shortness of breath should be examined by a doctor right away.
If your child is diagnosed with pulmonary atresia, you'll be referred to a heart specialist (cardiologist) for ongoing care. It's important for you to find a cardiologist who has experience treating people who have congenital heart defects, including pulmonary atresia.
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, of 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:
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- 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?
- Pulmonary atresia. Lucile Packard Children's Hospital. http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/cardiac/pa.html. Accessed July 25, 2012.
- Geggel RL. Diagnosis and initial management of cyanosis in the newborn. http://www.uptodate.com/index. Accessed May 9, 2012.
- Geggel RL. Cardiac causes of cyanosis in the newborn. http://www.uptodate.com/index. Accessed May 9, 2012.
- Bonow RO, et al. Braunwald's Heart Disease: A Textbook of Cardiovascular Medicine. 9th ed. Philadelphia, Pa.: Saunders Elsevier; 2012. http://www.mdconsult.com/books/about.do?eid=4-u1.0-B978-1-4377-0398-6..C2009-0-59734-6--TOP&isbn=978-1-4377-0398-6&about=true&uniqId=236798031-10. Accessed July 25, 2012.
- Dragulescu A, et al. Long-term results of pulmonary artery rehabilitation in patients with pulmonary atresia, ventricular septal defect, pulmonary artery hypoplasia, and major aortopulmonary collaterals. Journal of Thoracic and Cardiovascular Surgery. 2011;142:1374.
- Congenital heart defects. National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/health-topics/topics/chd/. Accessed Aug. 13, 2012.
- If your child has a congenital cardiovascular defect. 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. Accessed Aug. 13, 2012.
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