My Child Was Diagnosed with a Heart Defect – Now What?

When you receive the news that your child has congenital heart disease (CHD), it can be an overwhelming and stressful time. The majority of parents learn about the diagnosis while the mother is still pregnant, and typically when I see families in clinic they are working through feelings of guilt and loss.

As a pediatric cardiologist, I try to help put parents’ minds at ease, give them hope and connect them to resources that can help along their journey.

Typically one of the first questions mothers ask me is what they’ve done during their pregnancy to cause their child’s defect. And overwhelmingly the answer is nothing. The unfortunate reality is that we don’t know what causes CHD in many cases, but it appears heredity and genetics often play a role.

And I completely understand why families are working through feelings of loss – they’ve gone from having a healthy pregnancy to an “unhealthy child” and this is not what they were expecting, praying and hoping for.

I try to help ease some of their anxiety by explaining that having CHD today is not the same as it was 30 years ago. Many decades ago, pediatric cardiologists and cardiothoracic surgeons were focused on keeping the baby alive by using surgical procedures to help correct the defects. Today we have expanded and improved upon those techniques – so much so that babies are not only surviving into adulthood, but thriving.

In other words, the vast majority of babies who receive a congenital heart disease diagnosis go on to live “normal,” fulfilling lives. Many patients can even play competitive sports. For instance, tetralogy of Fallot hasn’t stopped Shaun White from winning multiple gold medals in the Olympics.

So if you’re just starting on this CHD journey, what should your next steps be? For those parents who have just received a congenital heart disease diagnosis, here are some suggestions:

Arm yourself with information. Learn about your child’s specific heart defect from reputable sites so that you can feel confident in the choices you make for your child’s care:

  • HeartPedia App. Our cardiologists have developed a free app which features interactive, anatomically-accurate 3D images of 10 of the congenital heart defects and their surgical repairs. This can help you and your family visualize your child’s specific CHD and explain it to others.
  • Heart Encyclopedia. This is a one-stop shop for everything related to cardiac issues in children, including all of the defects, diseases, signs and symptoms, diagnostic methods, treatment options, and a glossary of terms.
  • American Heart Association. They have a robust section on congenital heart disease.
  • Centers for Disease Control. Includes lots of helpful links such as research, scientific articles and data and statistics. 

Find a good pediatric cardiologist. Look for a pediatric cardiologist who will be a partner in your child’s care – one who will listen to you and address all of your needs, be a sounding board for your concerns, and will connect you to resources. Here are tips from one mother on how to choose a pediatric cardiologist.

Connect with other families. I can’t stress enough the importance of finding other families who are going through a similar situation you are. Your families and friends will be incredibly supportive but it is the families who have been through it before that will be able to truly understand what you’re going through.

Plus, it is invaluable to hear from CHD families who have children that are much older now and are thriving in their teenage and adult years. Whether you’re connecting in person or online, these CHD organizations can help you find other families in a similar situation:

As your child continues on this congenital heart disease journey, his needs will change throughout his lifetime. This is why it’s important to build a strong foundation of care, resources, and support to draw upon when needed. There will certainly be ups and downs along the way but if I can leave you with one message – one key take-away – it’s that there is much to be hopeful for. The majority of babies born with congenital heart disease go on to live meaningful and fulfilling lives as adults.

If you have questions, or would like to request an appointment, please contact our Heart Institute.

Dr. Sam Hanke

About the Author: Dr. Sam Hanke

Sam Hanke, MD, is a pediatric cardiologist at Cincinnati Children’s Heart Institute and Affiliated Faculty at the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s. He lives with his wife, Maura, and children, Owen and Annie, in Cold Spring, Kentucky.

Write a comment

Your data will be safe! Your e-mail address will not be published. Also other data will not be shared with third person. Required fields marked as *

Comments

  1. Suzanne Lovejoy June 27, 10:34
    My 6 day old grandson Luke Grayson Lovejoy was diagnosed with Transposition of the Great Arteries when his mommy was like 6 1/2 months pregnant. He is currently at Cincinnati Children's awaiting his heart surgery on Tuesday. We are all very scared for him and wish so much he didn't have to go through all this....but this article has gave us hope. Thank You
  2. Donna Gunn June 27, 12:08
    This is an informative and positive article!! The author, Dr. Sam Hanke, was very active in my grandson Tanner's care in 2013 when he was an inpatient for his second heart surgery. The most uplifting part of the experience for me was when I discovered that one of Tanner's primary nurses at the Heart Institute is a right hypoplastic heart patient just like our boy! She's in her late 20's and obviously thriving. We love Cincinnati Children's Heart Institute!
  3. Elizabeth Brent June 28, 08:34
    Great article, Sam-wise, optimistic, informative and supportive! Proud of you and all you are doing for babies with heart disease! Bets
  4. Ann November 09, 21:52
    Dr. Hanke, I would encourage you and all parents to check out The Children's Heart Foundation, the country's leading organization solely funding research for Congenital Heart Defects since 1996. www.childrensheartfoundation.org They also have a partnership with the American Heart Association and are earmarking $20 million over the next 5 years for CHD research, which is outstanding.
  5. Kay Taylor November 11, 00:27
    Great info....also know you will always cry over articles like this. If you are new to this journey, read "I Hate Pinatas, and other surprises". The author of this book new all my thoughts and feelings.
  6. wahida a kusain December 24, 17:20
    I have son having congenital heart disease he is only 2yrs old i want to know how to take care thanks i dont know how to do if she get sad
    • Rachel Camper
      Rachel Camper December 28, 09:22
      Hi Wahida, Please contact our Heart Institute to see how they might be able to assist you: 1-844-205-8826. You can also visit their web page for more information: http://www.cincinnatichildrens.org/service/h/heart-institute/default/