Hypoplastic Left Heart Syndrome: A Letter to Our Son’s Heart Donor Family
Dear Heart Donor Family:
That name seems so cold considering the role you now play in our lives. You saved our son’s life. We’ve thought about you a thousand times. We’ve wondered how you are coping. We know you miss that smile, tiny voice, and presence. And yet a part of your baby will be here, forever united, to our family. Your child’s heart. Eli’s body. Working together to give him life.
Our son, Eli James Kleckner, was born on July 16, 2013. He is the younger brother to Lucas, 6, and older brother to his sister, Ally, who passed away on February 22, 2017, from a heart complication.
Eli Diagnosed with Hypoplastic Left Heart Syndrome
Eli, who was diagnosed at 15-weeks gestation, was born with a congenital heart defect called hypoplastic left heart syndrome (HLHS). At birth, Eli received his first open-heart surgery called the Norwood. One week later, Eli had an emergency surgery to repair a clot that had formed in his BT shunt they placed during the first surgery. Eli did not progress as well as the doctors were hoping.
Soon, Eli was listed for heart transplant status 1A. On November 7, 2013, we received the call that a new heart was available for him. He then underwent a more than 15-hour surgery on November 8, 2013, where he received his perfect heart. Eli spent a total of 149 days inpatient at Cincinnati Children’s. During this time frame, Eli received three open-heart surgeries, including a complete heart transplant at three months old.
Following Heart Transplant, Eli is an Energetic Boy
Today, Eli is a loving, smart, energetic four year old, and a joy to everyone who meets him. He attends special needs preschool every day for three hours. His favorite things to do are sing, dance, and mow the grass with his dad. He has one physical disability in which his eyesight is extremely affected by the health journey he has endured.
Because of the decision you made, we enjoy Eli’s presence every day. Organ donation will always be a huge part of our lives and we are forever grateful for what you did for us in our troubling times.
Grateful For the Gift of Organ Donation
We feel an immense sense of gratitude, love, sorrow, guilt, and joy. Your family gave our son a chance at life.
We want to let you know how grateful we are for this gift. We think of, love and remember your family every day. While your child’s moments were cut short, we want you to live them all within our sweet Eli. We will never forget nor take your gift lightly.
A thank you will never be enough. It will never say what we feel in our hearts. It will never suffice for how we feel towards you and your family. We hope to take you with us on Eli’s journey from here on out.
Thank you for giving our son this life.
Thank you for your perfect heart.
Our son who was once half, is now whole.