Sisters by Heart: Supporting Families and Children Living with Half a Heart
"There is something wrong with your baby's heart."
Hearing those words from a doctor's mouth is completely devastating and immobilizing, often spurring the feelings of hopelessness, anxiety, fear and helplessness. Those words are spoken far too often. Every 15 minutes, a child is born with a congenital heart defect (1).
Despite the prevalence of congenital heart defects, public awareness and funding for research remains dismal. With a lack of resources and research, parents facing new diagnoses are often left in the dark, with little hope from even the medical community at large. In December of 2010, ten women came together to change that stigma - to offer hope in the midst of darkness.
The idea of Sisters by Heart began as simple act of kindness, a heart-felt Pay It Forward. Co-founders of Sisters by Heart gave birth to children with a severe congenital heart defect - Hypoplastic Left Heart Syndrome (HLHS) - a defect in which the left ventricle of the heart is severely underdeveloped and non-functioning (2). Survival rates for HLHS children continue to improve since the first reconstructive surgery trials in the 1980's, however the diagnosis remains extremely challenging. Immediate survival is dependent upon open heart surgery for cardiac reconstruction which occurs over several years, with the first staged reconstruction taking place within the first few days of life.
Knowing the devastation that accompanies an HLHS diagnosis and the lack of hope found in their own journeys, the founders of Sisters by Heart dreamt of creating a hopeful, safe and empowering organization for families facing this life-threatening defect. After only a few days of brainstorming, the determined women designed a logo, a website and created care packages specially designed for new HLHS families.
Sisters by Heart's care packages are not filled with "typical" newborn gifts - they include side snap Onesies and newborn hospital gowns for easy access to chest tubes, heart monitoring leads and IVs; Babylegs legwarmers to keep legs warm and free for pulse ox probes; hand sanitizer; journals for parents to jot down medical information or questions for their child's physicians; resource brochures; and hospital-grade pacifiers to promote sucking reflexes while awaiting surgery. After sending out a handful of these specially-designed care packages to families found through social media sites, Sisters by Heart obtained its 501(c)(3) status in order to reach more families.
In the past year, with growing popularity and need, Sisters by Heart expanded outreach to all families affected by HLHS, from those prenatally diagnosed, to adult survivors, to those whose children have passed away, through an online network called Linked by Heart.
In just two years since its inception, Sisters by Heart has shipped over 400 care packages (and counting) to families in the United States and Canada, and supported thousands of congenital heart defect families. The mission and goal of Sisters by Heart remains strong: to provide hope and connectivity, and to empower one another to share information, research, and knowledge for HLHS families.
Sisters by Heart's President, Stacey Lihn, mother to Zoe Madison, explains the urgency for parents raising children with HLHS:
"To brighten the future for our children, we depend on advancements reached through research and clinical trials. Much of the feedback we receive from families within the congenital heart defect community is the HOPE that stem cell therapy holds for our children. With the fast-growing number of children surviving and thriving with once-fatal congenital heart defects, we encourage innovation. We encourage cultivating the caregiver/physician relationship, to work together to enhance and promote progress. We welcome discussions with physicians, cardiac research centers, and scientific researchers regarding new and upcoming therapies, quite simply because our children's lives depend on it. We want to assist the medical community and researchers in improving survival rates, improving quality of life and longevity. We refuse to accept that our children's fates are dismal. We refuse to outlive our children."
Thirty years ago, all children born with HLHS had no hope of survival. We now have hope. Lots of hope which we continue to spread throughout our congenital heart defect community. We're optimistic, as are our children's pediatric cardiologists and cardiac surgeons across the country.
Help Sisters by Heart by raising awareness for America's number one birth defect, help fund innovative research and support local congenital heart organizations. Without awareness, Congenital Heart Defects will go on as a silent killer.
With awareness comes funding. With funding comes research. With research comes hope. With hope comes life.
To learn more about Sisters by Heart or support its mission of hope, please visit www.sisters-by-heart.org.