On Monday April 15, 2024 I will be running my second Boston Marathon in honor of my son, Hayden Adam. Monday mornings are of great significance to me. It was Monday, May 12th, 2014 that Hayden’s story began. A Monday morning that is forever burned deeply in my brain. Hayden was unexpectedly born with Transposition of the Great Arteries. TGA is a birth defect of the heart in which the two main arteries carrying blood out of the heart, the main pulmonary artery and the aorta, are switched in position, or “transposed.” A healthy, normally formed heart pumps oxygen-poor blood from the heart to the lungs through the pulmonary artery. The left side of the heart pumps oxygen-rich blood to the rest of the body through the aorta. In babies with TGA, oxygen-poor blood from the body enters the right side of the heart. Instead of going to the lungs, the blood is pumped directly back out to the rest of the body through the aorta. Oxygen-rich blood from the lungs circulates right back to the lungs and never reaches any organs. Hayden was essentially suffocating as soon as he was delivered. He was my easiest labor and fastest delivery, but the minute they placed him on my chest I knew something was horribly wrong. He took one gasp for air and then fell still. I remember he was a horrible mix of grey and blue and lips were practically purple. As fast as he was placed on my chest, he was taken away. The room filled with doctors and respiratory specialists and he was rushed to the nursery before we could process what was happening. His oxygen levels were in the low 40’s and even though they had began giving him oxygen, it didn’t matter. He needed serious medical intervention to survive. The hospital I delivered at was not equipped to handle the situation so they called for the NICU team at a neighboring hospital. After the NICU team from from the other hospital arrived, the head of the team came to the room with papers and very sternly said to me “your baby is very sick. We believe it’s his heart. We need to transport him to Boston. I need you to sign these papers so we can take him. If you don’t sign the papers, I will leave with him anyway and we need to leave right now. If you want to see him, you have to come right now”. When I tell you my epidural was still being removed and I had no feeling in my legs, I’m not exaggerating. I tried to get out of the bed as fast as I could, but I couldn’t move my legs. I remember my husband getting me into a wheel chair and being taken to the nursery and my entire world turned upside down. When I entered the nursery I never noticed anyone else, just Hayden. He was lying there lifeless and chaos ensued around him. I remember finally looking around the room. There were healthy babies all around me. Straight ahead, a nurse was feeding a newborn while she quietly cried as she was staring back at me. I hadn’t even cried yet. I was in shock. They put Hayden in the ambulance and headed to Children’s Hospital. I left against medical advice very shortly after and we headed to Children’s. Due to low oxygen levels for an extended period of time, Hayden started having seizures in the ambulance on his way to Boston. When he arrived at Childrens he had his first cardiac arrest. After that they began placing him on ECMO (extracorporeal life support). This machine basically did all of the work for his heart. It took his blood and circulated it through the ECMO unit, oxygenating it and pumping it back through his tiny body. The goal was to let his heart rest and get him stable enough for the major open heart surgery he needed to save his life. While placing him on ECMO, he had a second cardiac arrest. It wasn’t until much later that I discovered both of these arrests lasted over ten minutes each. The amount of times his little brain went without adequate oxygen that morning became another problem, but those concerns had to take a back seat to his heart. I didn’t get to see Hayden until the next day. He was in such poor condition that the doctors, nurses and surgeons did not want us in the CICU. The next day I remember walking into the CICU to see him for the first time since the delivery room. He was on a paralytic medication to keep him asleep and not moving. I had never seen so many medications and IV’s going in to one tiny human before. He was so unbelievably swollen and dried blood was coming from his nose and ears. I was horrified to see his chest was open. It had to stay open for the ECMO cannulas to be in his heart. His chest was covered with a thin green film that would bump every time his heart would beat. I died inside in that moment. If I gave every detail of his entire story, you would be here reading this forever, but I want everyone to truly understand why fundraising for childrens is so important to me. Hayden had his life saving 8 hour open heart surgery, an Arterial Switch, at 4 days old. Much like his delivery, nothing went smoothly. There were numerous complications and set backs. The goal was he would come off of ECMO right out of the OR, but instead he was on it for 9 days. He had small bleeds on the brain from being on ECMO and an MRI showed evidence of a stroke and damage to the grey matter in his brain. His kidneys and liver started to fail and it was a major struggle getting him off of all machines. His phrenic nerve suffered injury during his arterial switch, which we were warned could happen. Because of this, his diaphragm on the left side was left paralyzed which restricted his breathing. Every time he would eat or cry, his oxygen levels would drop. Eating was another struggle. I sat by his bed every day, holding his left hand and finally on day 11 someone asked me if I wanted to try holding him. Two nurses lifted him up by his sheets and placed him on my lap. He was still connected to an arterial line and a ventilator along with his IV’s so we had to be so careful. I remember they turned off his paralytic for a few minutes so he would wake up and it was the first time I had seen his eyes. I can’t explain the emotions that ran through me that day. When it was time to turn his paralytic back on I just cried as he went back to sleep. I just wanted it to be over. I wanted to take him home where his brothers were waiting for us, but instead of planning to bring my new baby home, I had thoughts about how you plan a funeral for your sick child who may never come home. Over the coming weeks he did improve and we were able to move to the step down cardiac unit eventually. When the day finally came, we didn’t take a “normal” baby home. We were in a much better place than we were at the time of his birth, but nothing that came after was ever “normal”. Hayden continued to have random seizures at home for a few months. Due to being on a constant push of morphine at the hospital, he became addicted to the pain medication. In the hospital, they used a mix of methadone (yea, you read that right) and Ativan to safely remove him from morphine. He was weaned off of the Ativan while still in the hospital, but came home still weaning off of methadone. Every time we would pull back even the smallest amount, he would go through horrible withdrawals or have seizures. I spent endless hours with him swaddled tight and pressed to my chest while I just bounced him. It was the only thing that helped him. Add in the weekly appointments to the pediatrician and in Boston (the car rides were horrible. He would just scream in his seat and all I could do was drive down the mass pike and cry). We also had no answers to how he would be cognitively after prolonged periods of lack of oxygen to the brain. It was a waiting game. First, get him off of the medications then wait and see if he ever smiles. Wait and see if he ever starts tracking me with his eyes. Hayden did eventually do those things. He was very delayed, but eventually started developing skills that let us know he was there. He was eventually diagnosed with Autism Spectrum Disorder, but is currently a very happy and HEALTHY thriving 9 year old. He LOVES sports, especially soccer and basketball. He is the most polite, gentle and loving kid you could ever meet. Last year, during my training and fundraising for Children’s, we had our first big set back with him in a long time. He became sick with a rash and a fevers reaching over 105 degrees. After rushing him to the hospital, he was diagnosed with Kawasaki Disease. He spent two weeks in the hospital and received infusions known as intravenous gamma globulin (IVIG). Although he is now back to needing cardiology testing and appointments every 6 months (we had graduated to yearly) he is once again healthy and thriving. Up until last year, Hayden’s story was one that has haunted me. It caused so much indescribable sadness at that time in our lives. Running the marathon for Hayden and giving back to programs that have lead to saving the lives of kids like Hayden has giving me the opportunity to take something negative and turn it into something so positive and beautiful. For the first time since his birth, I truly feel I have been able to heal from what I watched him go through. I am so thankful to everyone who has donated, shared and supported me on this journey. Thank you for taking the time to read about our amazing Hayden Adam.