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 or 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 or your child's diet.
- Write down any symptoms your or your baby is experiencing, including any that might seem unrelated to the reason for which you scheduled the appointment.
- Write down your or 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 you or 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 or 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 or your child's doctor include:
- What's the most likely cause of my or my child's symptoms?
- Are there other possible causes of these symptoms?
- What kinds of tests do I or 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 or intervention?
- What's my or my child's prognosis after surgery? Can I or my child live a normal life?
- My child or I have other health conditions. How can I best manage them together?
- Are there any activity restrictions that I or my child will need to follow?
- Will I or my child be able to play sports? Can my child participate in gym?
- Why did this happen?
- Will this cause a problem during future pregnancies, and is there any way to prevent it? Is there a risk my tetralogy of Fallot can cause a problem to my future child or children?
- 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 or your child's doctor is likely to ask you a number of questions, such as:
- When did you first notice your or your child's symptoms?
- Have your or your child's symptoms been continuous, or occasional?
- Does anything seem to improve your or your child's symptoms?
- What, if anything, appears to worsen your or your child's symptoms?
- How are you or your child eating and sleeping?
- Have you noticed fainting spells or episodes when your or your child's lips and skin become more blue or dusky?
- Are you or your child vomiting or losing weight?
- Have you or your child had heart racing, breathlessness or leg swelling?
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 child more comfortable:
- 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.
- In case of emergency call 911 or go to an emergency department.