Linked By Heart
Supporting and Linking Families Across the Country
Linked by Heart advances the mission of Sisters by Heart by fostering connections amongst the single ventricle community through regional, online support and by providing local resources to families.
Linked by Heart is generously run by parent volunteers known as “Regional Coordinators.”
Our Regional Coordinators are moms from across the nation who understand first-hand the experience of having a child with single ventricle anatomy. These Coordinators strive to connect families with others in their area for local support and information.
Any family affected by single ventricle anatomy is invited to register with the
Linked by Heart Network and/or join the Regional Facebook group in their area.
Linked by Heart (LBH) is divided amongst six regions within the United States. Each region is represented by Regional Coordinators (introduced below). Regional Coordinators assist families in “Linking Up” with other families who live in their geographic area or receive care and treatment at the same cardiac center.
Private Facebook groups for each region are available to join as another way to connect with other single ventricle families. Each regional page is maintained by Regional Coordinators. The goal is to offer families a safe, hopeful, and comfortable environment through a network of families at different stages in their single ventricle journeys. Direct links to LBH Regional Facebook pages are provided below.
Click on your map region below to see your local Sisters By Heart representatives.
Susie's daughter, Teagan, was born in 2008 with critical aortic stenosis, which led to Hypoplastic Left Heart Syndrome. Teagan had her first open heart surgery at 6 days old (Norwood/DK Stansel ) and her second open heart (the Glenn) at 6 months old. In her first year she also had 3 heart catheterizations, ng tube feedings for 9 months and multiple physical therapy/feeding therapy appointments. Today, Teagan is a thriving, happy and life-loving 3 ½ year old who brings so much joy to her family! They are so blessed to have her in our lives!
Susie Maxwell
Kelsey is married to the "All American Guy next door" and is the mother to a miracle. She considers herself a life juggler, trying to manage a home, a business, a career, two children, and of course her marriage. She has learned through personal experience that with tragedy can come some of life's greatest blessings. She is blessed and feels blessed to be able to give back.
Kelsey Garka
Erica's son, Aaron, was diagnosed with HLHS in 2011 while they were living in northern Montana. Erica, her husband and their daughter moved to their native home in Colorado to receive treatment for Aaron. Today, Aaron loves school and being outdoors with his sister and younger brother back in Montana. Erica loves being active in the heart community and is honored to connect with and share the HLHS journey with other families.
Erica Isakson
Kelsey and her family reside in Gilbert, Arizona. She is the mom to heart warrior, Kennedy Claire. Kennedy was born in June of 2015 after being prenatally diagnosed with HLHS. She is currently post Fontan as of June 2019. Kennedy struggled interstage and experienced many feeding issues before the Mulvaney family decided to tube wean using an online tube weaning group. Since weaning, Kennedy has flourished. Kennedy regularly attends preschool and has a fantastic group of close friends. She is also a great big sister to little brother, Keegan. Kelsey is married to a wonderful husband, Kevin, who is a part of Bros by Heart. The Mulvaneys love to be around family and friends and feel honored to be able to support other HLHS families.
Kelsey Mulvaney
Kali was born and raised in a small town in Southeast North Dakota, where she now lives with her Husband Tanner, and four beautiful daughters Jozie, Emmy, Megan & Brook. She works part time as a dental Hygienist and full time as a mom and wife. Her heart mom Journey began in February 2008 when shortly after Jozie's birth, it was discovered something was wrong with her heart. She was diagnosed with HLHS, DORV, & Heterotaxy. Jozie has undergone 4 heart surgeries and is doing extremely well. Kali enjoys camping with her family in the summer and watching her kids in all their activities. Kali is a support parent for Project Carson, an outreach program in ND for families facing special healthcare needs, and is looking forward to reaching out to more families through LBH, sharing Jozie's story & offering HOPE to families.
Kali Kiecker
Jenny joined the heart world in 2014 when her son, Aiden, was prenatally diagnosed with HLHS. Since then, she has become active in the heart community and using her voice to advocate for others or help new families navigate this new world. Jenny has been married to her husband, Philip, since 2010, and has an older son, Noah, who is heart healthy.
Jenny Rodgers
Meghan joined Linked By Heart as the Northeast Regional Coordinator in 2012. Her daughter Brooklyn was born with HLHS in February 2011, and is now post-Fontan and keeping everyone on their toes! Brooklyn has a younger sister Kennedy who adores her big sister to the moon and back. The Nicchi's reside in upstate New York, but all of their cardiac care is centered at Boston Children's Hospital in Boston, MA. Their secondary care takes place at Albany Medical Center. Receiving care across two states allows Meghan to have strong connections with a number of practitioners along the east coast, which gives her many resources for fellow HLHS moms in the Northeast Region. Meghan works full time as an Athletic Trainer in New York which provides her with new challenges daily, but she is thoroughly fulfilled and overjoyed by being able to connect, communicate, and share information with other HLHS moms that are all going through this heart journey together.
Meghan Nicchi
At Jennifer's 20-week anatomy scan, she received the heartbreaking news of her son, Stephanos's diagnosis. She stayed hopeful throughout the second half of her pregnancy, and held on to the inspirational success stories shared by the Sisters by Heart families. She delivered her son in the SDU at Children's Hospital in Philadelphia in August 2017. Stephanos has had his Norwood surgery at 7 days old and hemi-Fontan surgery at 4.5 months old. He will likely have his Fontan early next year. He is doing incredibly well and is not just surviving, but thriving. Although this journey was unexpected and has come with natural worries, struggles and fears as a mother, it has brought much joy to her family. Through Stephanos's challenges with weight gain and feeding tube weaning, Jen is determined to help others and has integrated herself within the heart community. She is eager to support new families at no matter what part of the journey they are on.
Jennifer Kyriakodis
Tara is currently a college student hoping to graduate in 2022 as a RRT. (Registered Radiology Technologist). She is married to Christopher Gibson and has two children, Mallory and Collin. Collin is her heart warrior, and he was born in July of 2008. Collin receives all of his medical care at Children’s Healthcare of Atlanta. Tara's journey began in April 2008 when she heard the words Hypoplastic Left Heart Syndrome at a maternal fetal specialist. She had never heard of the words before and quickly begin to worry for her unborn child. At the time there was no Sisters by Heart or social media filled with groups to give that support that she so much craved. Tara is humbled to be a regional coordinator for the Linked by Heart Southeast region, doesn't take this position lightly. She hopes she can give back that hope, love and courage that everyone needs on this long but incredible journey.
Tara Gibson
Cassie is the mother of James, 3, born with HLHS and a severely restrictive atrial septum. James was diagnosed prenatally at 24 weeks. Being thrust into the heart community, Cassie has taken on several roles to help give support to other heart parents walking the same journey. Cassie is the Southeast regional co-coordinator for Linked by Heart and a parent partner with the National Pediatric Cardiology Quality Improvement Collaborative, whose purpose is better outcomes for HLHS children. She has also travels annually to Capitol Hill to advocate for funding and awareness. She is married to a wonderful Englishman and currently has 3 children. She loves football and anything sweet to eat.