Tyler Thayer   |   February 7, 2016

Harper’s Story

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Congenital Heart Defects are the number one birth defect in the US and the most common cause of infant mortality. Most people have never heard of CHD until someone close to them is affected. Today begins CHD Awareness Week and we want to shed light on the effects of CHD and the importance of continued research. This is the story of Harper born with Hypoplastic Left Heart Syndrome (HLHS – essentially only half of a functioning heart). Harper’s story is told by her mother, Beth.

Harper pic1Our daughter Harper was born on January 16, 2015. We knew before she entered this world with us that we would be faced with some challenging situations. Harper was diagnosed with HLHS at 25 weeks before birth. We knew she would have to overcome many obstacles, but not once did we lose our faith that God would take care of our girl. She was born 7lbs. 7oz. 18 inches at 2.09 pm at Vanderbilt. She was exactly what I imagined she would be, beautiful and rosy pink. When she was three days old she underwent her first open heart surgery known as the Norwood Procedure. While waiting to see how she was doing after surgery we were informed by our surgeon, Dr. Mettler, that her heart was the poorest they have seen in a very long time. They didn’t think she would make it through the night. But our God came through and she was put on ECMO (life support) for about 14 days. During those 14 days she underwent all sorts of different procedures trying to give her the best shot to come off ECMO. She finally did and we were so proud God pulled through for us once again. She did well and looked amazing for 7 days. During the 7 days they did many ultrasounds to make sure all was well with her and it was, but they didn’t predict what would happen next. We went home just to get a good night’s rest with her older brother Gavin. I kept telling my husband (Josh) that something just was not right with her. I had that feeling. I kept telling the doctors, but they assured me that they didn’t suspect anything and all her tests looked good. In the early morning I called to check on her before heading back to the hospital, the nurse reassured me she was doing well and had a great night. Not 15 minutes later they called back and she had gone into cardiac arrest.Harper pic2

When I arrived I had the feeling that she was not going to be ok from then on. She immediately went back on ECMO and was sustained on that machine the rest of her time. After cardiac arrest they did numerous test EEG, EKG, and ultrasounds. They even took her back again for another open-heart surgery to try and remove a clot but it was gone and we thought our prayer was answered then. But little did we knew the clot just moved around in her little body messing every organ up that stood a chance. During the next couple of days we watched her to see how she would progress. They decided they would take her back for another surgery to redo what they did in Norwood and connect her BT shunt straight to her lungs. I thought, “ok this is it we got this.” But over time her progression just seem to worsen and we as parents had to dig deep and come to a conclusion that God needed her and we were so lucky to have her as long as we did. Days to come she was put on dialysis to get excess fluid off. She just was not doing well at this point. They told us during many meetings with them that a time would come when we would have to call family to come see her. So we called every close relative to come as soon as they could. We waited out three days of visits just to make sure everyone got to see and hold her as best as they could. On the 15th of March at noon they slowly turned down the ECMO machine to see how she would do. Within minutes we all knew that this was it for Harper. Her lips turned blue instantly. We prepared at that second for a time we thought we would never have to face as parents. I held her in my arms and as my husband sat beside us and we watched her pass in my arms. Harper lived for 59 days and I know that God was right there with us the whole time.

Over the past 30 years the surgical treatment of complex Congenital Heart Defects has improved by leaps and bounds. Interventions like the BT shunt and ECMO have given children a chance at life that would otherwise be impossible. However, more research is still needed to save the lives of babies like Harper. Join us in spreading CHD awareness and sharing Harper’s life story.

 

PROJECT HEART IS A 501(C)(3) NONPROFIT DEDICATED TO RAISING FUNDS FOR CHD RESEARCH. HELP US CHANGE THE LIVES OF CHILDREN LIVING WITH CHD. DONATE A TAX DEDUCTIBLE GIFT TO PROJECT HEART AND SUPPORT CHD RESEARCH HERE: HTTP://THINKPROJECTHEART.ORG/DONATE

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