You're likely to start by seeing your family doctor or a general practitioner. However, you'll then be referred to a doctor trained in treating heart conditions (cardiologist). Your child will often be referred to a doctor trained in treating children with heart conditions (pediatric cardiologist).
Here's some information to help you get ready for your appointment, and what to expect from your child's doctor.
What you can do
- Be aware of any pre-appointment restrictions. When you make the appointment, ask if there's anything you need to do in advance, such as restrict your child's diet.
- Write down any symptoms your baby is experiencing, including any that might seem unrelated to the reason for which you scheduled the appointment.
- Write down your child's family history, including details 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 upsetting news, which might make it harder for you to remember what the doctor says afterward. Someone who accompanies you might help you remember the doctor's recommendations.
- 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 child's symptoms?
- Are there other possible causes of these symptoms?
- What kinds of tests does my child need? Do these tests require 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, and is there any way to prevent it?
- 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 ahead of time, don't hesitate to ask other questions during your appointment.
What to expect from your doctor
Your child'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 the doctor's appointment and for treatments, here are a few tips to help make your baby more comfortable:
Oct. 08, 2015
- Feed your baby slowly. Try smaller, more frequent meals.
- Help your child during a tet spell. Your child's skin, nails and lips might turn blue after crying, feeding or waking up. If you can remain calm, it can help reduce your child's anxiety. Improve circulation to your child's heart and lungs by gently raising his or her knees to the chest.
- What is tetralogy of Fallot? National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/health-topics/topics/tof. Accessed Aug. 4, 2015.
- Doyle T, et al. Pathophysiology, clinical features, and diagnosis of tetralogy of Fallot. http://www.uptodate.com/home. Accessed July 31, 2015.
- Doyle T, et al. Management and outcome of tetralogy of Fallot. http://www.uptodate.com/home. Accessed July 31, 2015.
- Facts about tetralogy of Fallot. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/heartdefects/TetralogyOfFallot.html. Accessed July 31, 2015.
- Tetralogy of Fallot. Merck Manual Professional Version. http://www.merckmanuals.com/professional/pediatrics/congenital-cardiovascular-anomalies/tetralogy-of-fallot. Accessed Aug. 4, 2015.
- Bonow RO, et al. Congenital heart disease. In: Braunwald's Heart Disease: A Textbook of Cardiovascular Medicine. 10th ed. Philadelphia, Pa.: Saunders Elsevier; 2015. http://www.clinicalkey.com. Accessed July 31, 2015.
- Warnes CA, et al. ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: Executive summary. Circulation. 2008;118:2395.
- Tetralogy of Fallot. American Heart Association. http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/Tetralogy-of-Fallot_UCM_307038_Article.jsp. Accessed July 31, 2015.
- Ferri FF. Tetralogy of Fallot. In: Ferri's Clinical Advisor 2016. Philadelphia, Pa.: Mosby Elsevier; 2016. https://www.clinicalkey.com. Accessed Aug. 4, 2015.
- Finding support. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/birthdefects/families-support.html. Accessed July 31, 2015.
- Getting support. American Heart Association. http://www.heart.org/HEARTORG/Caregiver/ReachOut/GettingSupport/Getting-Support_UCM_301847_Article.jsp. Accessed Aug. 4, 2015.
- Riggin ER. Allscripts EPSi. Mayo Clinic, Rochester, Minn. Aug. 4, 2015.
- Connolly HM (expert opinion). Mayo Clinic, Rochester, Minn. Sept. 9, 2015.