Meet Our Kids
Our driving force.
No two children with single ventricle defects are alike. Each of us experience our own roller coaster of ups and downs, both physically and emotionally. Below are profiles of the children of our current board members, each living and thriving with half a heart.
Aaron
Aaron was prenatally diagnosed with HLHS while his family was living in Northern Montana. With no treatment centers within a safe distance of Montana his family moved back to their home state of Colorado, where Aaron was born in June, 2011. After his Norwood surgery (at 4 days old), Aaron’s recovery and interstage period up through his Glenn (at 4 months old), followed a relatively expected course. Aaron had his Fontan in June, 2014 and while the cardiac surgery went well Aaron experienced an undetermined number of small strokes. With time and therapy Aaron has worked hard to recover many of the skills he lost, and he is thriving in school. Aaron is a sweet, happy boy with a kind, tender and precious heart.
Bennet
Bennet was postnatally diagnosed with HLHS 24 hours after birth and was airlifted to Mattel Children’s Hospital at UCLA. He underwent his first surgery at 5 days old and had a complicated recovery. He came home 100% tube fed at 8 weeks old. After his Glenn surgery at 4 months old he began to find his personality and strength. When Bennet was 18 months old he weaned from his feeding tube completely and began to make large strides in his development. By 2 years old he was walking, talking and loving life. He is now post Fontan (completed 2016) and doing amazingly well, all while keeping his parents on their toes!
Bennett
Bennett was prenatally diagnosed with Double Outlet Right Ventricle and Transposition of the Great Arteries. After his birth in 2015, he overcame many complications after multiple heart surgeries, including a stroke at five months old. Despite his rocky start, he enjoyed years of stability and growth between his Glenn and Fontan, living life as an unstoppable toddler. Bennett's Fontan surgery in 2019 brought another complicated recovery, battling chylothorax and fluid issues. However, with his perseverance and great medical team at Lucile Packard Children's Hospital, Bennett is a happy, healthy, energetic kid today. Bennett loves skateboarding, karate, his older brother Hudson, and going to the beach as much as possible.
Bodie
Bodie was prenatally diagnosed with HLHS in 2009. Born with both HLHS and Catecholaminergic Polymorphic Ventricular Tachycardia (genetically induced arrhythmias), Bodie’s journey has had many unexpected bumps along the way. In addition to the three planned surgeries, Bodie has also had a shunt revision, 2 pacemaker surgeries, and a cardiac nerve surgery. Following the nerve surgery at 6 years old, Bodie unexpectedly went into heart failure and has been in heart failure since. Yet despite this, he is managed well with medication, lives life to the fullest and has not yet been listed for a transplant! All of his surgical care has been performed at Children’s Hospital of Los Angeles, and he is also jointly followed by the Heart Failure team at Lucille Packard Children’s Hospital. Although pacemaker dependent, he has boundless energy and keeps his family on their toes. He lives in San Diego with his parents, older sister Sierra, dog, 3 cats and 12 chickens. In his spare time, he loves building Legos and riding horses. He exudes joy, and the Bennett family is so grateful to get to witness his journey.
Dylan
Dylan was prenatally diagnosed with HLHS and was born in 2012. He had a relatively uncomplicated Norwood with sano shunt and Glenn performed at Ochsner Hospital for Children that same year. After the Glenn, Dylan experienced feeding tube dependence and struggled to eat orally. However, by his first birthday, and through focused therapies, he was able to overcome his dependence and eat everything by mouth. In 2015, as our surgical center was in between surgeons, we travelled to Texas Children’s Hospital for his Fontan (EC, non- fenestrated). Dylan spent two years in physical therapy to overcome a leg clot (post Norwood) associated limb length discrepancy, but he does not let it slow him down. Dylan enjoys reading, writing books, and playing kickball, golf and video games. His favorite roller coaster ride is Thunder Mountain at Disney World.
Izzy
Isabel (“Izzy”) was born in 2015 and diagnosed with HLHS 48 hours after birth. She was emergency transported to Lucile Packard Children's Hospital where she underwent her first surgery, the Norwood, at 6 days old. All three surgeries were performed by Dr. Frank Hanley at LPCH and although her recoveries have included some bumps, she is now post-Fontan as of April 2019, and a thriving fireball of energy! Isabel loves dance, art, and hiking in the many wonderful Bay Area parks. Most of all, she is a constant inspiration to her family and friends.
Tyler
Tyler was given a post-natal diagnosis and airlifted to Lucile Packard Children’s Hospital hours after birth in 2011. In addition to HLHS, Tyler had an intact atrial septum, and has subsequently been diagnosed with intractable epilepsy. Tyler had a feeding tube until 6 months old prior to transitioning to oral feeds. Now surpassing everyone’s expectations after a rough beginning, he is an active boy who loves sports - especially hockey. The family’s goal for Tyler is for him to lead as "normal" a life as possible - allowing him to experience as many fun and wonderful things as he can. He is treated at Lucile Packard Children's Hospital at Stanford.
Weston
Weston was prenatally diagnosed with HLHS and Heterotaxy Syndrome at 22 weeks. Shortly after his birth in April 2018, he underwent his first open heart surgery, as well as an intestinal malrotation surgery. He spent a month in Wolfson Children’s Hospital’s CVICU. At four months old, Weston underwent his third surgery, the Glenn. After this surgery, he was thriving with the assistance of his amazing physical and occupational therapists. In the summer of 2021, Weston had his fourth surgery, the Fontan. He recovered quickly and was home to start school in August. He is on the autism spectrum and attends an ESE preschool program at the local elementary school. He sees his cardiologists twice a year and is continuing to thrive. In between appointments you can find him running at a local park, singing his favorite songs, and building block tower creations with his little sister.
Zoe
Zoe was prenatally diagnosed with HLHS in 2009. She is one of the youngest to undergo the Norwood procedure at 15 hours old. The hemi-Fontan and Fontan completed her heart reconstruction. While Zoe resides in Arizona, she travels to the Children’s Hospital of Philadelphia for needed interventions and surgeries. Zoe is many things – happy, healthy, witty, and wise – but most of all, she is a constant inspiration to the Lihn family.
Every child and family we've ever had the pleasure of coming across on this journey has touched our hearts. This collage is to honor our roots, while looking forward to a future of supporting more families impacted by HLHS. We are so grateful to the Board members who worked tirelessly to start this organization, those who have joined us since, and the families and donors who have kept us going. You all inspire us!
