Advice and Lifelong Considerations for Parents of Children with CHD

  • January 16, 2019

When a child is diagnosed with congenital heart disease, there are a lot of lifelong considerations parents need to take into account. Tim Watson, M.D., a pediatric cardiologist at Sibley Heart Center Cardiology, has learned firsthand what kinds of things parents need to consider with their child, both now and in the future, and shares his knowledge in this post.

Not All Physicians Have the Same Specialities

While all pediatric cardiologists study and treat heart diseases and heart abnormalities, some physicians can have extra training in subspecialties of cardiology. Some of these include echocardiology (the study of complex heart ultrasound interpretation), electrophysiology (the study of heart rhythm abnormalities), cardiac catheterization (interventional procedures), adult congenital (take over care after children with heart disease become adults), and more.

“With this diversity of subspecialties, it’s important to know that your child may need to work with other physicians to get a full-rounded understanding of their condition,” says Dr. Watson. “The physician a patient has seen for the last ten years may do one thing, but other physicians will perform other tasks within their subspecialty.”

How Your Child Can Prepare for The Visits

When you go into a clinic to meet with your child’s doctors for a routine appointment, the physician will review their medical records and surgical information. While it may seem repetitive to go over this each time, these answers are extremely valuable information that could help doctors know what next steps they need to take.

For children or teenagers, in particular, it’s often hard to get a history from them. Certain questions we ask gives us insight on how their body is handling their heart condition or how they are doing after a surgery,” Dr. Watson says.

In short, your child needs to come prepared to answer your doctors’ questions, even if they’ve been asked before. Some questions they (or you if you have a baby) would expect to be asked include:

For babies:

  • How is your baby feeding?
  • Does your baby feed comfortably or look labored?
  • How is your baby’s energy level?
  • Is your baby gaining weight?

For children/teens:

  • How is your energy level?
  • Do you feel like your heart is often racing?
  • Have you had any trouble breathing or easily get shortness of breath?
  • Have you noticed any unusual swelling?

How You Can Prepare for Their Visit

Here are the main ways you can prepare for your child’s visit:

  • Write down any questions or concerns. If there are concerns or questions you have before or after your child’s appointment, write them down somewhere in your smartphone (in a notes app would be best). By doing this, it takes the pressure off you to remember these questions at your next visit. You can also do the same thing if your child is showing new symptoms and you want to know if these are connected with the heart condition.
  • Recall any surgeries, ER visits, or new medical issues. Any detail you can give your child’s cardiologist about these will help them get a full understanding of your child’s condition.
  • Talk about sports participation. It’s important for doctors to understand if a patient has had surgeries and they plan to play organized sports. They may need to undergo other tests or discussions to make sure their heart rate is good when they exercise.
  • Insurance. Do you have a change in coverage happening soon? If so, the sooner you can bring this information to the Sibley Heart Center business office, the better. Some of the cardiac tests/procedures can be expensive, especially if you have a high deductible. Our team can provide information on the the cost of the visit and how your insurance coverage will impact your bill.
  • Make sure your child is wearing easily removable clothing. Your child’s heart will be thoroughly examined, and it’s essential they wear clothing that is easy to remove. Your child may be asked to wear a gown to facilitate examination of the heart. A tank-top is often more comfortable for older girls and generally allows the cardiologist access to areas of the chest needed for a thorough cardiac exam.
  • Bring a distraction. Whether it’s toys, books, homework or a tablet, it’s recommended to bring something to occupy your child’s time. These appointments are typically longer than a general pediatrician appointment (depending on all the tests that need to be performed and time of day), so bring something to pass the time.
  • Use MyChart portal after the appointment. To review your child’s chart electronically, Sibley Heart Center Cardiology has a MyChart portal that not only lets you review, but you can also send messages to your doctor and refill your child’s prescriptions.

Why The Long Wait?

You may feel like your time in the waiting room is far too long, but there’s a good reason for it. Unlike most practices, Sibley Heart Center Cardiology physicians review every single test and echocardiogram (echo) image before we send you and your child home. If there are significant problems that comes to surface during these visits, this may result in tedious discussions that same day.

Other factors for the long wait include technical difficulties, variability between physicians, and more. No matter the case, know that our team will make every effort to make your waiting time as short as possible.

Stress Testing

One of the common types of cardiac testing your child can underdo is stress testing. During these tests, doctors will thoroughly work your child out to make sure their heart can tolerate exercise. This test is conducted on either a treadmill or bike, and doctors will look at their heart rhythm, blood pressure and oxygen levels. When the child is pushed to their physical limit, the doctor can confidently understand if they can perform physical activity.

CT Scans and MRIs

CT scans and MRIs are imaging tools for echocardiologists and create 3D images of the heart. While echocardiograms (echoes) are used to look at heart conditions before or after surgery, these ultrasounds can become harder to read as patients get older. Also, certain parts of the heart are challenging to see by ultrasound, and CT scans and MRIs allow doctors to look at these areas.

The main differences between these two tools are CT scans are quicker, often do not require sedation, and new imaging technology allows for lower radiation exposure. MRIs take between one to four hours to complete and often require sedation for children less than eight years of age since a child has to lay still and follow breathing commands during the scan. MRIs can measure the volumes inside the heart which helps in medical decision making.

Your child’s heart condition will always be a priority in their life. Here are other considerations they will need to take into account as they enter the teen and adulthood stages of their lives:

  • Let the child take ownership of their heart condition. Doctors will often ask questions that are directed for the child, and they need to get used to what kinds to questions to prepare for.
  • Playing sports. More times than not, your child will be able to continue participating in physical activity. Make sure they understand that it’s good to take breaks and rest when they get too tired.
  • Make note when follow-up visits are needed. Since your child is taking ownership of their condition, they will need to make sure their follow-up visits are scheduled at adequate times. They will need to keep in mind specific schedule breaks such as spring break, Christmas, or summer break to make sure this appointment works with their schedule.

To learn more about advice and lifelong considerations for parents of children with congenital heart disease, here are some resources Dr. Watson recommends: