Three years ago this week I was the most grateful, relieved Dad in the world. Not long before that I was the most frustrated and worried Dad in the world.
My adult son, Alex, needed open-heart surgery, something rare for people under 30. The consequences of not having this surgery were that his heart at some point was going to fail suddenly, finally. As a parent, that’s a shocking and upsetting thing to know.
The problem was, Alex didn’t want surgery. He put it off as his diagnosis worsened and doctors grew more pointed about scheduling it. Today Alex is healthy and happy with his life in Lake Tahoe, where he snowboards more than 100 days a season. If all goes well at a checkup later this month, he will graduate from annual follow-up visits to periodic exams. “I feel blessed to be here, 3 years of snowboarding later,” he texted when I chatted him up on the anniversary. “I made the right decision, for sure.” It was a bumpy road to get to this happy anniversary. In the months Alex stalled I was frustrated and angry and hurting for someone I loved deeply and felt I had to protect. What seemed obvious to me was interpreted by him far differently, because he was the one going through it. He was an adult, he was the patient, it was his decision. I had to let go. Not of my love or support for him; that would never waver, even if he made a decision that seemed potentially tragic. I had to let go of the sense that I could control him or the process. And I needed to learn to understand why someone who already had one five-hour surgery before he was even 18 months old might not see things the way doctors or his parents did. Alex was born with health issues that required a tracheotomy, and a hospitalstay for three weeks. His mother and I were told at the time that he could develop heart issues. He grew up going to annual checkups at C.S. Mott Children’s Hospital. When Alex was released from pediatric care at 18, he still had cardiology visits every few years to monitor his heart. Eventually doctors said he could be a candidate for heart surgery when he was older – as in decades older. To put it simply, Alex has had more than a lifetime of doctor visits and tests. About 7 years ago, doctors noticed a worrisome decline in some heart functioning. Now they were talking surgery in terms of 5 years or less. In 2020 his doctors laid out the options for valve-replacement surgery, recommending it happen within 12 months. There were two possibilities: Install an artificial valve via a catheter, or via open-heart surgery. As test results worsened, he agreed to explore the catheter procedure. But doctors at three different hospitals told him his heart’s condition made the procedure too risky. This is when the real pain and frustration started as a parent. Alex balked at open-heart surgery, despite doctors telling him he could lose his spot on the surgical schedule. That without the surgery, his long-term prognosis was grim. Agonizing months passed. I had to respect my son’s feelings, fears and space. But I also worried and prayed. His mom was in the same boat. There were hard conversations and, admittedly, a lot of tears. But we couldn’t force him to make the decision we would make. Finally, two years after that initial test result, he agreed to surgery. That was three years ago. It went without a hitch; recovery – while no picnic – also went well. At his one-year follow-up at UM, my own heart swelled when Alex eagerly showed his surgeon a video of himself snowboarding. “I was obviously very skeptical when I was in that position, but I have proof now you were 100 percent right,” Alex told the doctor. I don’t need to tell him, “I told you so.” I don’t need to relive the pain and frustration I felt when he didn’t want to have life-saving surgery. I can just be grateful that my son is still here, snowboarding to his heart’s content. # # # | 