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https://npcqic.org/sites/default/files/bulletins/Interstage_Final_080917.pdf
These feelings are normal. There is a community of parents with HLHS children who have walked a mile in your shoes and want to provide you with support and connection. • Connect with other HLHS parents, through your hospital, a local support group or online. • Identify a trusted caregiver for your child so you can find a few hours to
https://www.chop.edu/stories/hypoplastic-left-heart-syndrome-jackley-and-lihn-families-story
“Other HLHS moms are a huge wealth of support,” says Stacie Jackley. “They keep you strong.” After meeting Stacey Lihn through Sisters by Heart, Stacie Jackley began to reach out to moms who posted on the Cardiac Center’s Facebook page, including Jackie Ross, whose son, Xavier, is also treated at CHOP for HLHS.
https://npcqic.org/resources-parents-and-families
Parent's Guides to HLHS. Our Family Cares (formerly Patient and Family Support) Learning Lab sponsors a network of parents, clinicians, and researchers who aim to improve HLHS patient and family support. One of their projects was to develop Parent's Guides to HLHS. The purpose of these guides is to offer support, information and resources to ...
http://www.sistersbyheart.org/
Sisters by Heart is intended to be a support group only. We do not have any medical expertise. We are here to give our personal experiences and offer our support for newly diagnosed parents going through this HLHS journey.
https://www.littlehearts.org/
Little Hearts, Inc. is a national organization dedicated to providing support, education, resources, networking, and hope to families affected by congenital heart defects. Membership consists of families nationwide who have or are expecting a child with a congenital heart defect.
https://hlhskids.com/support
We support advocacy initiatives that promote truly patient-centered care—empowering patients and their families by providing them with the information they need and ensuring they play the central role in the healthcare team.
https://www.childrensmercy.org/contentassets/fbc69288f8684b1db1b85e2fdb691ffa/cmh-specific-hlhs-post-glenn-bulletin-edit-done-ep.pdf
A Parent’s Guide to HLHS: Adjusting Post-Glenn For parents of children with hypoplastic left heart syndrome (HLHS) or another single ventricle heart condition, the time after Glenn completion can be exciting, yet scary at the same time. This bulletin was designed by
https://www.facebook.com/HLHS-Support-Group-118783084859462/
HLHS Support Group. 191 likes · 1 talking about this. Hello, our names are Ryan and Miranda, we had a son (Wyatt), born 2/11/10 with HLHS. He unfortunately passed …Followers: 199
https://www.childrensmercy.org/contentassets/fbc69288f8684b1db1b85e2fdb691ffa/cmh-specific-hlhs-interstage-bulletin.pdf
the support and resources they need while in the hospital and after discharge. Hospital Support POPS (Parents Offering Parent Support) - connect with another parent who has a child with HLHS “Guided” Mindfulness Meditation-strong, capable, brave, and Chapel (Ground Floor) every Tuesday & Friday from 12:30-12:50pm Heart Beads Program
http://www.sistersbyheart.org/content/who-we-are
Sisters by Heart - Board of Directors Sisters by Heart is a group of heart moms who came together during their CHD journey – some of whom were fortunate to meet prior to their CHD warriors arrival. We’ve supported each other in our journeys with our con
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