The first week of April 2020, my 15-year-old son, Kai, began complaining of abdominal pain. A few days into it I took him to our local ER where I thought he would end up with an appendectomy. They found that his heart was enlarged and he had a lot of fluid build-up. He was transferred to UK where he was placed in ICU. Early morning on 4/8, the doctor told me that Kai would need to go to Cincinnati Children’s Hospital because he would need mechanical support. We had no idea what this meant. Once at CCHMC, Kai went to ICU and we were told he was in complete heart failure and his diagnosis was dilated cardiomyopathy secondary to chronic myocarditis. His heart was double the size it should be and the right ventricle had been doing all the work and it was determined that Kai had a virus that settled in his heart and the right ventricle wasn’t able to handle the work any longer.
On 4/18 Kai received a left ventricular assist device (LVAD) because his heart could no longer support him. Kai had a tough go of it after his LVAD surgery, he had several nose bleeds and was only able to go home for 9 days before he was back in the hospital. After several days of tests, they found the hose of the LVAD had a kink in it prohibiting adequate flow. They decided to place him on the transplant waiting list as “urgent” on 6/23 and tried to manage the issues he was having as he waited for a transplant.
At 3:48 am on 6/25 I received the call that there was a heart for Kai. When the lead doctor came in that morning she shared that she had decided that night that they couldn’t wait for the transplant because Kai had had such a terrible night so to get this news she was happy. He went to the OR around 3:30 pm and the team was wonderful. They kept us updated and would let us know how Kai was doing and what was happening. The moment they told me he was on the bypass machine I just cried and prayed, he no longer had his sick heart.
Kai went to ICU and struggled with a fever but eventually, it broke and he was on the road to recovery. My husband and I really struggled with praying for a heart for our son because we couldn’t pray for another person’s death. A wonderful care team member helped us understand that we weren’t praying for someone to die but rather if a family was placed in a situation where they had to make the choice that they would choose to donate their loved one’s organs. That changed everything for us.
Kai had never been sick before and was a healthy, active football and basketball player so this experience was so unexpected. Organ donation saved our son’s life. Prior to this experience we never really thought about organ donation but seeing how many children and adults are in need of a life-saving organ, I want to help to get the word out.
Register to be a donor if you haven’t already. Talk to your family about Organ donation. If you ever are faced with the unimaginable decision to donate a loved one’s organs, remember; donors are true heroes. One donor impacts so many lives. Our son is learning to drive, has his first part-time job, and is able to enjoy his friends and ride dirt bikes again. He is blessed to have received a donor’s heart and I hope one day we can meet the donor family so they can know we pray for them daily and see that their decision made a huge impact.