Mission 

            McCoix was prenatally diagnosed with HLHS and soon after he was born we also found out he had TAPVAR and an anomaly collateral left pulmonary artery. So not only one heart defect but three in one, nothing our doctors or any of the other doctors they were in contact with had ever seen together. They believe McCoix’s heart developed the way it did because of a random mutation genetic disorder (not carried by mother or father) known as Kabuki Syndrome. Not all children with Kabuki have heart defects but it is known to happen. 

            When we found out he had HLHS, it was something that Heidi had heard of due to the unfortunate circumstances of her friend, Katie’s daughter Rowan who had passed away from complications of HLHS as well. Heidi knew we would have a fight on our hands. So, we knew we were going to fight this battle head on and give McCoix a chance to do the same. We joined groups, we reached out to friends, we had people reaching out to us saying they knew someone who knew someone. This made us feel like we weren’t alone, this made us feel confident in knowing that we could do this. 

            Once McCoix was born he needed help and he needed it quick, he was very sick and would need surgery within the first week of life (five days old to be exact). They were only able to get half way through the first surgery when they realized there was more than just the HLHS diagnosis. This is where we found out about the TAPVAR and anomaly collateral left pulmonary artery. They closed him up and he was still very sick, more so than he was going into surgery. Two weeks of waiting and praying we were told the worst…we were told that McCoix’s liver and kidneys were in failure and we would need to provide him with palliative care from here on out. McCoix didn’t like the sounds of that and prayers were answered, McCoix’s health was improving and we would start to take it day by day.  He made it through half of the first surgery, conquered NEC (necrotizing enterocolitis), sepsis and endocarditis. Three major infections that could have killed him. But he wasn’t going anywhere. He wanted to prove this disease wrong and continue fighting and so he did. He had everything going against him and definitely had some doubters along the way but he gained weight (he was very small) and got to the point where the doctors decided he was strong enough to finish the first surgery and fix a couple other issues while they were in there. This was going to be a 12 plus hour surgery and they didn’t think he would make it, but we knew we had no other option if we wanted our son to have a chance. So many times, we were told to seek palliative care but so many times McCoix proved us wrong and we needed to be his advocates and fight for him, we did just that. McCoix went into surgery and rocked it! He came out looking better than we could have all imagined. The hard part was over…now the crucial part of waiting 72 hours post-surgery creep up on us. We made it about 18 hours and we were called to come to the hospital because he had gone in to cardiac arrest, I think we flew there because we don’t remember much of the drive. Luckily, for McCoix the episode didn’t last long and he recovered, 24 hours down and we were still doing ok. Then we got the call no parent wants to get. He is in cardiac arrest again and things aren’t looking promising this time. We had a 40-minute drive that felt like a life time.  We didn’t make it in time, our warrior lost his battle. Heidi thinks he got a little taste of heaven the day prior and decided it was his time. 

            McCoix’s battle lasted four and a half months, 124 days in the hospital to be exact and he fought until the very end.  The doctors, nurses, cardiologists, respiratory therapists, nutritionists, endocrinologist, gastrologist all fought with him. The team at Sacred Heart was our second family, they knew more about McCoix than we did, they knew more about how we were feeling than our own family did. They were the people there day in and day out taking care of our son. They were the ones reaching out to colleagues all over the United States to get their recommendations on treatment, doing their own research on McCoix’s case because it was so rare. The hospital staff is nothing short of extraordinary. When COVID hit and we couldn’t go in to see him, they were there. They were the support we needed. They are on the front lines of this battle and see the worst of the worst but also see the miracles that happen as well.