Regional Coordinators and Facebook Pages

 

Linked by Heart (LBH) is divided amongst six regions within the United States. Each region is represented by our Regional Coordinators (introduced below), moms from across the nation who’ve walked in your shoes and want to help you connect with other families in your same situation. They can assist you in “Linking Up” with other HLHS families in your geographic area or receiving care and treatment at your hospital.

Private Facebook groups for each region are available to join as another way to connect with HLHS families. The pages are established and maintained by LBH Regional Coordinators. These Facebook groups are open by invitation requests only for families in your region. Our goal is to offer you and your family a safe, hopeful and comfortable environment through a network of families at different stages in their HLHS journeys. Direct links to LBH Regional Facebook pages are provided below.  

Linked By Heart

North West

Linked by Heart North West Facebook Group

Susie Maxwell

susie@linked-by-heart.org

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!

Kelsey Garka

kelsey@linked-by-heart.org

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.

South West

Linked by Heart South West Facebook Group

Christie Saunders

christie@linked-by-heart.org

Christie is a Southern California mom of four amazing kids, including her HLHSer Bennet. She jumped head first into advocating for the heart community when Bennet was diagnosed 24 hours after he was born. Bennet is enjoying life post Fontan and doing amazingly well, while Christie is embracing her unexpected, yet incredibly rewarding life as a heart mom.

Erica Isakson

erica@linked-by-heart.org

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.

Mid West

Linked by Heart Mid West Facebook Page

Raina Blake

Raina@linked-by-heart.org

Raina is a stay at home mom to Kylan. She graduated from Northern Illinois University in 2000 with a BS in Accountancy and has a CPA. After several years in the corporate world, Raina decided to focus her life on being a stay at home mom once she found out she was pregnant with her son that would be born with have hypoplastic left ventricle and aorta, along with DORV, TGA and MVA, Transposition of the Great Vessels and Mitral Valve Atresia. In 2 years Kylan had gone trhough 3 open heart surgeries, 4 cardiac catheterizations and 2 other surgeries and is doing amazing. She loves meeting new heart families and sharing her experience, and she feels most fulfilled staying at home watching her Kylan and two twins, Jonathan and Delaney, grow, develop and enjoy life.

Amanda Hokanson

Amanda@linked-by-heart.org

Amanda lives in Crete, IL, a suburb of Chicago. Her son, Austin was born on December 23rd 2010 and was the Christmas present she could have ever received! Austin has an older sister, Morgan.  Amanda and her husband found out at their gender scan that Austin had HLHS.  The family was given so much encouragement by our cardiology team from the very beginning even though this diagnosis is so complex. Austin is thriving in school and looks forwards to his cardiology appointments!  Since Austin was born Amanda's goal has been to support parents of children diagnosed with HLHS.  She and her husband, Eric, attend NPC-QIC conferences and are active in the Linked by Heart and Brothers Linked by Heart communities.  In between everything Amanda runs her own in-home childcare.  It is her greatest pleaseure to meet and support new heart families!

Kali Kiecker

Kali@linked-by-heart.org

 

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.

South

Linked by Heart South Facebook Group

Sarah Stewart

Sarah@linked-by-heart.org

Sarah has been a Linked by Heart South coordinator for several years. Sarah is active in her local heart community. She is the lead coordinator for Mended Little Hearts of Dallas and sits on Children's Health Heart Center's Family Advisory Council. Sarah was a public school educator before having Emma and just completed her Ph.D. Sarah lives in the DFW area with her husband and dog Max.She has been married for 12 years to her high school sweetheart Scott. Their beautiful, sassy, and sweet daughter Emma was born with hypoplastic left heart syndrome with an intact atrial septum. Emma also had a rare genetic condition called coffin siren syndrome. Emma lost her battle with congenital heart disease the the summer of 2017 at the age of 6. Sarah is passionate about educating and empowering other CHD families to advocate for their children as well as supporting families during all stages of the CHD journey.

Brandi Gandy

Brandi@linked-by-heart.org

Dec. 6th, 2010 Brandi and her husband went in for their routine 20 week sonogram and their lives were changed forever. They were expecting their second child and could not wait to find out the gender! That was the day they learned that their little girl would be born with a very special heart (HLHS). Madison was born on May 2nd, 2011 in Houston Texas (TCH). She had her first surgery at a week old, and emergency cath at 4 weeks old, her Glenn at 6 months old, a couple more caths, and her Fontan at age 4. She is now doing absolutely amazing! She is active, beautiful, smart and a walking miracle! Brandi never even knew about this heart world, much less thought I would ever be a part of it. But, she is proud to be a heart mom, proud of my heart warrior, and is blessed to be a part of such an amazing community. Talking to other families has really made Brandi's journey easier and she hopes she can help provide some comfort and support to others.

Jenny Rodgers

Jenny@linked-by-heart.org

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.

North East

Linked by Heart North East Facebook Page

Meghan Nicchi

Meghan@linked-by-heart.org

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.

Christi Cordaro

Christi@linked-by-heart.org

At 19 years old, Christi was very unprepared for what motherhood would bring.  An early ultrasound (at 12 weeks) revealed news that turned her world upside down. Christi delivered Mia in the Special Delivery Unit at CHOP on December 20th, 2012! Christi eagerly entered into the heart community and began building friendships that would assist during the hardest times of her life. Her daughter survived the three palliative surgeries (4 days, 4 months & 27 months), a pacemaker placement, struggles with weight gain and tube weans. So many challenges were overcome. In April of 2017 Christi became a regional coordinator for the NE region! She looks forward to connecting with new families and being a support for them as they begin a life changing journey!

South East

Linked by Heart South East Facebook Page

Tara Gibson

Tara@linked-by-heart.org

Tara is currently a  college student hoping to graduate in 2019 with an Associate’s degee in either Echocardiography or Diagnostic Medical Sonography. 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 recieves 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.

Cassie Clarkson

Cassie@linked-by-heart.org

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.