You're likely to start by seeing your family doctor or a general practitioner. However, you will then be referred to a doctor who specializes in disorders of the heart (cardiologist).
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 restrict your baby's diet.
- Write down any symptoms your baby is experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Write down the baby's family history, including as much detail from both the maternal and paternal sides of the family.
- Ask a family member or friend to come with you, if possible. Sometimes it can be difficult to remember all of the information provided to you during an appointment. Additionally, learning that your baby has a heart defect is very upsetting news, which may make it harder for you to remember what the doctor says after that. Someone who accompanies you may remember something that you missed.
- Write down questions to ask your child's doctor.
Preparing a list of questions can help you make the most of your appointment time. For tetralogy of Fallot, some basic questions to ask your child's doctor include:
- What's the most likely cause of my baby's symptoms?
- Are there other possible causes for these symptoms?
- What kinds of tests does my child need? Do these tests require any special preparation?
- What treatments are available, and which do you recommend?
- What are the possible complications of surgery?
- What's my child's prognosis after surgery? Can he or she live a normal life?
- My child has other health conditions. How can I best manage them together?
- Are there any activity restrictions that my child will need to follow?
- Will he or she be able to play sports? Participate in gym?
- Why did this happen?
- Will this happen again in future pregnancies?
- Is there any way to prevent this from happening?
- Are there any brochures or other printed material that I can take home with me? What websites do you recommend visiting?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment at any time that you don't understand something.
What to expect from your doctor
Your baby's doctor is likely to ask you a number of questions, such as:
- When did you first notice your child's symptoms?
- Have your child's symptoms been continuous, or occasional?
- Does anything seem to improve your child's symptoms?
- What, if anything, appears to worsen your child's symptoms?
- How is your child feeding and sleeping?
- Have you noticed fainting spells or episodes when your child's lips and skin become more blue or dusky?
- Is your child vomiting or losing weight?
What you can do in the meantime
While you're waiting for your doctor's appointment and for treatments, here are a few tips to help make your baby more comfortable:
Feb. 23, 2012
- Feed your baby slowly. Also give him or her smaller, more frequent meals.
- Help your child during a Tet spell. During a Tet spell, your child's skin, nails and lips may turn blue after crying, feeding or waking up. If you can remain calm, it can help reduce your child's anxiety. You can help improve blood circulation to your child's heart and lungs by gently raising his or her knees to the chest.
- Tetralogy of Fallot. National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/health-topics/topics/tof. Accessed Nov. 2, 2011.
- Doyle T, et al. Overview of the management of tetralogy of Fallot. http://www.uptodate.com. Accessed Nov. 2, 2011.
- Bailliard F, et al. Tetralogy of Fallot. Orphanet Journal of Rare Diseases. 2009;4:2.
- Tetralogy of Fallot. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/heartdefects/TetralogyOfFallot.html. Accessed Nov. 2, 2011.
- Apitz C, et al. Tetralogy of Fallot. The Lancet. 2009;374:1462.
- Warnes CA, et al. ACC/AHA 2008 guidelines for the management of adults with congenital heart disease. 2008;118:714.