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A Gift of Love Local Youth Receives Donor Heart And Transplant

photo by provided Joshua Barnes has got this and this is a new heart!

photo by provided Mom Sarah and Joshua are thankful for a gift of love and life.

photo by provided Boston Children's Hospital has been Joshua's second home for many years.

Tuesday March 14, 2017

By Cookie Steponaitis

Joshua Barnes was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) while in the womb and was born with essentially half of a healthy heart. Joshua’s left ventricle was underdeveloped and he had a leaky aortic and mitral valve. The diagnosis was so grave that doctors encouraged parents Dan and Sarah to consider an abortion due to the poor quality of life the baby would have. His parents never considered that as a possibility and went to the Children’s Hospital in Boston where Joshua was induced a week early and had his first stage open heart surgery at three days old. “Joshua was always a fighter,” explained mom Sarah Barnes. “I was told he couldn’t nurse but he nursed until he was two. He was flown to Boston at four months because of a valve being blocked and had his second surgery. Joshua had several open-heart surgeries before he was four, including installing a pacemaker.”
    Steady, happy and healthy, Joshua experienced his next downturn of health the summer he turned ten. The family spent six weeks in Boston at the hospital and saw the impact the condition was having on his health. Joshua was placed on a transplant list and the family turned to their faith in God, a love of each other and support of loved ones to give Joshua the best possible life. While it is not always easy for the family to juggle Joshua’s hospital stays and his other siblings, the group faced each struggle as a family and was also blessed to be helped by their church family and friends. At the Children’s Hospital in Boston the family found the very best surgeons, doctors, nurses and staff and a network of resources and willingness to include holistic care. “A chef even came to Joshua’s room to see if there was anything to make the food more enticing to eat,” shared mom Sarah. “They literally make being in the hospital the best experience it can be.”
    Based on priority and wait time Joshua was listed two years ago and went through extensive testing to make sure his other organs were functioning so he would be a good candidate for a successful transplant and with many all over the country needing a transplant, it was imperative for Joshua to take his medications, and be reevaluated annually to see if he still qualified. “There is a status plan for transplants,” shared Sarah. “Status 1a individuals get top priority. They are severely ill and not expected to live long and are in intensive care or on advanced life support. Status 1b is the next priority and receives IV medication to make their hearts work. Joshua was listed as Status 2 which means he was not hospitalized and would only receive his heart if it was not needed or able to be used by a Status 1a or b recipient.”
    The family received a totally unexpected call on February 16th that a perfect heart was found for Joshua. “I almost dropped the phone,” stated Sarah. “It wasn’t even on my radar as he seemed to be doing fairly well physically.” Packed and on route quickly, it was the same day when the trans-formative surgery began. The family kissed Joshua, prayed over him and watched as the doctors wheeled him away. “The surgeons shared that their biggest amount of work was cleaning out all the scar tissue and that it was a miracle Joshua was still alive. His wire from the pacemaker into his heart was covered by scar tissue. The new heart came into the room at 4:00 AM and the surgeon reattached it to Joshua.” Joshua woke up on Sunday afternoon and immediately shared with his family he had more energy. “I think I would like to run,” grinned Joshua, “but I am not sure my legs will hold me. I love my new heart.”
    The Barnes family cannot put into words the thankfulness they have for the family who chose to donate life in their darkest hour. “We cannot imagine the anguish they feel at losing someone they love,” expressed Sarah Barnes. “What we can say is that we are grateful for their gift of life and that we will honor that gift by the best life we can possibly live. We have talked often with Joshua and he wants to use his life to honor them by passing on kindness and grace to others. We are so in awe of this precious life and gift.” The family will contact the donor family through the hospital at a later date out of respect to their grieving, but have witnessed a life changed. Joshua had known mostly hospitals and surgery before the transplant and now his conversations of late include growing tall, running and hiking.
    The Valley Voice celebrates with the community the smile of a little boy who has been given a gift of life and honors the sacrifice and love of the family that let their time of grief give hope to another family. For people interested in learning more about organ donation and how they can give life, go to neob.org, which is the New England Organ Bank.

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