“Five years ago, this August, we welcomed our second child, our daughter Gemma. Just weeks before her birth we learned her heart was not anatomically perfect and in order to survive she would need multiple open-heart surgeries and even more than we could have anticipated. Our daughter’s heart defect is called Hypoplastic Left Heart Syndrome or HLHS. This is when the left ventricle is underdeveloped or nonexistent and without surgery is fatal. The pediatric cardiologist explained Gem’s defect was like a lightning strike on a clear sunny day. There was no cause or genetic link to reason for this happening to her. It was one of the most terrifying moments to look upon all these other babies and families and see a world we never knew existed until this moment, to tour a unit we would come to call our home away from home.
Gemma breezed through her first two open heart surgeries, one at 2 days old and the next at 5 months old. After her second surgery we went home to enjoy life, no longer having to live in a bubble quite as tight as we had been instructed to for the first few months of Gemma’s life. However, at 8 months old a common cold became too much for our daughter’s heart. Gemma went into cardiac arrest and stopped breathing in her daddy’s arms after waking up screaming in the hospital. It would be 25 of the longest minutes of our lives as her medical team worked tirelessly to revive her. They were successful but the damage was done, Gem suffered a bilateral watershed infarction leaving her with cerebral palsy, restricting her vision to shadows in bright light, and stripping away all developmental milestones she had accomplished. She also suffered an injury from compartment syndrome in her arm, this is the moment where I found my humor, my life vest, that keeps me from drowning in everything life and Gemma’s heart condition has thrown in my and my family’s path.
Gemma was rushed to emergency surgery just 14 hours after her heart stopped to save her arm from the compartment syndrome that had developed. The surgeon explained he wouldn’t know whether he would be able to save Gem’s arm or remove it. And all I could say was, ‘Well I guess we will buy her a new one.‘ We had just watched a special on college students 3D printing mechanical superhero themed hands, so it seemed like a reasonable response. The look on the surgeon’s face said otherwise but our daughter’s cardiac team loved it! It showed I had perspective of our situation and in the grand scheme of things at least our daughter was alive. Our sweet Gem went from walking, sitting and eating on her own to complete uncertainty of the world around her. From that moment we asked for all therapies to be ordered and we gathered and sorted through all the ways we could help our daughter. We hit the ground running and we have never looked back. After a month in the hospital we finally went home.
Unfortunately, it would not last long. After two months at home it was clear while at a physical therapy session things were not okay with Gem. She was readmitted to the hospital and it was found her heart was not performing as it should be. It was hopeful a valve replacement would help her heart, but it was short lived. Just days before Gemma’s first birthday we learned a heart transplant was our last option. We celebrated her first birthday and decided to have our daughter listed for a heart transplant. Transplants are not a cure; they are swapping out one set of concerns and issues for an entirely new set of issues and concerns. Choosing to list our daughter for a heart transplant was easy in some ways. We listed our daughter understanding a heart may not come in time to save her. Love and hope helped us to live through those days of uncertainty, to make the most of them with the hope we would get more of them. We decorated for the holidays and dressed up for Halloween. We hung stockings for Christmas and decorated our Christmas tree provided by the hospital.
Four months later, on New Year’s Eve, our gift of life came for Gem, a perfect four chambered heart was on its way. There was no better way to start the new year than with a new heart. We may have started the new year with hope, but another family was starting their new year missing a child, and every single day that child is on our minds. Gemma’s donor heart has been truly an amazing gift. I will never forget walking in to see Gemma after surgery and seeing her so pink! Her heart defect had always kept her on the bluish side, from her skin to her nails. Gemma was discharged 28 days after her heart transplant, we finally got to go home on her big brother’s birthday.
Gemma’s donor heart has overcome so many things. Just six months after her transplant we woke up to find Gem lethargic and unresponsive. An ambulance ride and survival flight later she was in the hands of her cardiac team. She was placed on ECMO, a heart and lung machine that does the work so the body can rest. We joked Gemma had finally tried out every piece of equipment in the hospital. We found out Gem was septic from 3 different infections. She spent just 5 days on ECMO but her lungs still had plenty of healing to do and her kidneys were not quite ready to do their job. At this time, you could find me in the halls performing the ‘pee dance’ in the hopes Gemma’s kidneys would start working properly. If you’re wondering what my ‘pee dance’ is look no further than Carlton from The Fresh Prince of Bel Air. And I wasn’t alone in my dancing efforts either, any staff who stepped foot in Gemma’s room had to participate. Her kidneys did pick up the pace and Gem would eventually be able to come home about a month later.
Over the next couple of years, it’s been an up and down battle. The hospital at times feels like a revolving door and perhaps we should have a punch card where you get a free visit after so many. Simple illnesses most of us wouldn’t bat an eye at require extra support because of Gemma’s special immune system because of her transplant. Gemma’s kidney disease (thanks to her heart defect and sepsis) make staying home during infections very tricky. Illnesses and infections are all a balancing act that feels like walking on ice while dodging a pitching machine. We are cautious during cold and flu season choosing very carefully what to participate in. We can never be sure who is out in public sick and risk passing their infection on to Gemma.
There is always the risk of rejection looming. Gemma has catheterization to check her heart numbers and taking tissue samples. This past year a new blood test has been introduced that reduces the need for catheterizations because it can check for levels of rejection in the blood itself. So far Gemma has had one run in with rejection, caught in her blood work. This required high doses of IV steroids which is every parents dream, a steroid raging toddler. In all seriousness a steroid raging toddler is the best-case scenario, so we’ll take it! More recently a discovery of hypertension cost Gemma a two-month hospital stay with a dash of sepsis. Which led to the removal of her port, and then having a new port placed after the infection was cleared. The newest fight with sepsis led to hemodialysis for several days before her kidneys started working again. Gemma’s hypertension currently has no known cause and is requiring quite a bit of medication to control.
Over the last couple of months since discharge though she has been able to reduce blood pressure medications slowly and we are somewhat gaining more sleep. All the while Gemma pushes through with a smile on her face. She has returned to school. She started back into therapy and nearly hit the ground running and pushing more than I ever expected. She continues to surprise us and those around her. She is truly a miracle and a ray of hope to how we should all live our lives. We should all be pushing our limits and laughing in the face of negativity and hardships.”
This story was submitted to Love What Matters by Lindsay Gauger. You can follow her on Instagram here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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