Sending Hope, Healing, and Heart Hugs

Apr 29, 2020 | Brianna N. Tranby | @briannatranby

Sisters by Heart was formed in 2010 by a group of heart moms who came together to support others on the journey of being a heart parent. The organization became a member of the HLHS Consortium in 2017, becoming the first advocacy group to join. Today, the mission of Sisters by Heart is to support, educate, and empower families affected by HLHS.

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One of the ways the group supports families is by providing care packages for those who are newly diagnosed to help make their bedrest or hospital stay a little easier. The Todd and Karen Wanek Family Program is proud to collaborate with Sisters by Heart to provide these packages. Our shared goal is to ship a care package to each and every family facing a new diagnosis of HLHS in the United States. We believe it is especially important to support families during times like these, which is why we remain committed to continue providing care packages.

As fellow moms of children with HLHS, we know the devastating toll a new diagnosis can take on families. We help parents and siblings take the first steps forward -- to find hope, arm themselves with resources and specialty items, and validate the range of emotions they may be feeling. We are mindful and update the items in our care packages as new items or resources become available. For families, receiving this gift early on gives them a sense that 'a whole community is by our side through everything.'

-Stacey Lihn, Sisters by Heart President

Since 2017, on behalf of Sisters by Heart, the team at the HLHS Program (led by Traci Paulson) has delivered an average of 21 care packages every month. The packages include a variety of items specially chosen to make the time spent in hospitals a little easier:

Side-snap shirts and onesies designed for use around tubes and wires
Baby leg warmers
Pens/notepads for tracking important details
Swaddling blankets
Hand sanitizer and moisturizer
Sibling gift
Resources and support information

If you or someone you know has recently learned their baby has HLHS, you can request a care package at no cost.

For older kiddoes, Sisters by Heart also provides “Fontan Superhero Packages” for toddlers preparing to undergo the Stage III surgery! You can learn more and request a Superhero Package here.

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our 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. Email us at HLHS@mayo.edu to learn more.

Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other. Our community is a safe space to share experiences, ask questions, find answers, and exchange support. The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties. Here are some you might like to follow: