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So you’ve learned that your child has a congenital heart defect (CHD). Their diagnosis might feel overwhelming. You might feel like the world has gone sideways.
“My first reaction was to pick my baby up and run out the door; somehow thinking that that would save her life. The feeling was indescribable.”
At Sibley, it is our privilege to mend and manage hearts so our CHD patients and their families can get back to living lives simply and to the fullest. If you’re just starting your heart journey, here are the basics of what to expect.
“A doctor I didn’t know, with ‘Pediatric Cardiologist’ stitched on his white coat, was at the door. In that moment, I knew our entire world was about to be flipped upside down.”
CHD is not diagnosed with a single test. Your doctor will use some combination of family history, risk factors for CHD, a physical exam. Testing may also involve performing an EKG and/or echocardiogram (aka “echo”, which is an ultrasound of the heart).
Once you have a diagnosis for your child, here are some basic Do’s and Don’ts that may help you deal with this stressful new normal.
Don’t Google. (Or at least Google sparingly and for specific resources, like local support groups.) Other Heart Moms and Dads will tell you: you can cause yourself a lot of unnecessary stress and confusion Googling, especially in the early days. Many congenital heart conditions are not always straightforward and certain information on the internet may not apply to your child’s specific heart condition. Cardiologists see a wide variability in certain conditions and it is best to get prognosis and therapeutic information directly from the provider taking care of your child.
Do ask your doctor for trusted resources you can turn to.
Do write down questions when you think of them so you can ask your doctor later. One Heart Mom remembers keeping a notepad by her bedside table so when she woke up in the night, or thought of nagging questions before bed, she could write it down. You can also use the notes application on a password protected/secure smartphone to store questions as they come up throughout the care of your child.
Do practice self-care and ask for help when you need it. You are not being selfish by asking for help. As one Heart Parent put it, you will need your strength so you can be strong for your child. Take care of yourself.
Preparing for Your First Appointment
Preparing for that first appointment is an example of okay Googling. Check to see what forms or information your provider wants you to complete or bring in with you. Sibley provides this quick reference guide for first time patients. Talk to your provider’s scheduler or front desk to check that you have come ready with all the health and insurance information they will need.
Pediatric cardiology appointments can take 2 to 3 hours, depending on testing and the needs of your child. This also means that you could be in the waiting room for a while. The wait time varies in the office depending on the number of patients seen that day, complexity of other patients, and if the cardiologist has to handle significant clinical issues with other patients/families before your visit time. Sibley’s cardiologists strive to ensure you are seen as quickly as possible.
Bring along what you need for your child, be a snack, beverage or their own comforting toy. Movies and tablets are great distractions for toddlers and aid in the performance of certain tests, especially echocardiograms. Visits that require an echocardiogram usually take longer since the echo tech must take time to gather detailed ultrasound images to help the cardiologist in making a plan for your child. Time is also needed for the cardiologist to review all of the images before they relay the findings to you. This process is important, so you can know ALL of the results before you leave the clinic.
Finally, don’t forget about yourself, so grab a book or a magazine before you come to the doctor’s office. You’ll likely want to take some notes, too, so bring a notebook or your smartphone.
Assembling Team YOU
“Finding out there is something wrong with your unborn child is devastating. I felt very scared and isolated.”
Caring for a child with CHD, especially at the beginning, is stressful and you will need help along the way. Turn to people you trust and tell them what’s going on. Ask your doctor and nurses to give you a quick explanation of your child’s CHD and treatment plan, as far as they can, that you can use when telling friends and family members.
Find support groups local to your area. CHOA and Sibley offer a program called Kids at Heart that includes mentor programs and family outings to provide social, educational and support opportunities. Ask to speak to a fellow Heart Parent who’s further down the road on their journey. Many Sibley Heart Parents find this connection and mentorship to be helpful and comforting as they go through tough days.
Ask for help when you need it. Don’t be shy about accepting help, either. The people offering a helping hand want to lend you their support. One day, you may be the person helping another CHD family, so take the help that’s offered to you and remember to pay it forward when you can.