HLHS Cause to Cure

Hypoplastic Left Heart Syndrome Program from Mayo Clinic

Share this:
January 25, 2013

Sisters by Heart

By jthebiay

We here at the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome often hear about organizations providing support to families affected by congenital heart disease - one of those being Sisters by Heart, a group offering support and hope to families with newly diagnosed children with HLHS. Stacey Lihn, president of Sisters by Heart, tells us how the group got started and what it is currently doing to provide hope to families affected by HLHS...

A recent recipient HLHSer, post-Norwood, with his care package.
Photos courtesy of Sisters by Heart.

It all started with just one email via social media amongst fellow moms – moms of children who were born with Hypoplastic Left Heart Syndrome (HLHS) - and Sisters by Heart was born. Active within the online “heart community,” we heard about new HLHS diagnoses on a near-daily basis. When we read a blog post from an expecting mom about how she broke down in the middle of Babies ‘R Us, unable to find anything her son could wear after his upcoming open heart surgery (http://parkersfight.blogspot.com/2010/12/praying-for-miracle.html), the founding members of Sisters by Heart jumped into action. From one email and a care package, Sisters by Heart came to fruition. Within a few days, we had a logo, a website and several care packages shipped to families expecting their HLHS infants.

Sisters by Heart is a non-profit 501(c)(3) organization supporting newly diagnosed HLHS families by offering hope and a variety of resources for the HLHS community. 

Sisters by Heart began in December of 2010 with ten founding members, serving just a few families. Since then, we’ve added three board members, provided care packages to over 400 newly diagnosed families, and provided information and opportunities for the HLHS community to connect.  All in all, this is no small feat for a congenital heart defect affecting approximately 2 in 10,000 live births.

With growing popularity in the past year, we saw a significant need to "link" families up with each other.  And so, Sisters by Heart launched Linked by Heart (http://www.linked-by-heart.org/) – an avenue for HLHS families to connect with each other and learn about others’ stories and experiences with HLHS. As soon as Linked by Heart launched, the network grew and we’ve seen a steady incline over the past several months.  For the families we serve, locating “like-minds” in the midst of an HLHS journey can be greatly beneficial – in gaining a sense of normalcy, finding hope through others’ journeys and empowering one another to share information, research and knowledge.  

As we enter our third year as an organization, all of us at Sisters by Heart are honored and humbled to continue providing HOPE to HLHS families in the United States and Canada, as well as a multitude of resources specific to HLHS.   

We are grateful and proud to partner with top cardiac centers across the country, including Mayo Clinic, who support our mission, understand the importance and benefit of supportive networks, and provide updated research and information to our HLHS community.  All members of Sisters by Heart and Linked by Heart are volunteers and our specialized care packages are funded wholly by donors.

Our inspiration is fueled by the families to whom we serve and offer hope:

“The support that Sisters by Heart gives to new families with HLHS does not just end with their lovely and thoughtful care packages. That is just the beginning. To know you are not alone and have a sense of community is priceless.”
~ Sarah, mom to Cecilia


Our program would like to express our gratitude for the support Sisters by Heart provides to families affected with HLHS, and send a big congratulations on the start of their third year as an organization! Thank you for what you do!

To learn more about Sisters by Heart, nominate a newly diagnosed HLHS family for a care package, or support its mission with a monetary donation, please visit www.sisters-by-heart.org/

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.

Tags: HLHS, Hypoplastic Left Heart Syndrome, Linked by Heart, Mayo Clinic, Sisters by Heart, support for HLHS, Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome

Please login or register to post a reply.
Contact Us · Privacy Policy