Lessons from the HLHS Family Research Study

Dec 18, 2015 | Suzanne Ferguson | @suzannerferguson

Recently, we published a blog post on a new study showing the incidence of heart defects in family members of those with HLHS. The study looked at parents and siblings of those born with HLHS and discovered a significant percentage of family members also had some type of heart defect.

This is the largest study of its kind to recommend that parents and siblings of patients with HLHS be screened for possible heart defects. The study also recommends continued screening later on in life as some family members had complications with their ascending aorta which can lead to aortic dissection and sudden death. (The aorta is the main artery in the body.)

So what does this mean for you?

If you are the parent or sibling of someone with HLHS, it is important to be screened for a possible heart defect. The screening can be done noninvasively using an echocardiogram to obtain images of the heart. Being screened will allow your care team to find any life-threatening cardiovascular issues. It is also recommended that even if your echocardiogram is normal you receive a follow-up echocardiogram later on in life to screen for any possible issues with the aorta.

It is important to remember that only a percentage of family members of those born with HLHS were diagnosed with a heart defect. However, it is vital to be screened in order to reduce any complications or risk for the future.

Do you have any questions regarding this study or another HLHS related topic? Feel free to contact us at HLHS@mayo.edu.

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.