The AAS Ethics Committee continues our 2023 blog series, presenting member’s submissions from this year’s essay contest. We are also delighted to promote the 2024 Art and Essay Festival. Click HERE to learn more about this year’s event and submit your work.
“I’m sorry but your non-invasive prenatal screen came back as high risk for Trisomy 18…we need to schedule you for genetics counseling as soon as possible…oh, and it’s a boy, again, I’m so sorry.”
As I hung up the phone, I tried to recollect all the findings I could think of about Trisomy 18 that I had learned from medical school so many years ago—the only one that matter was that Trisomy 18 babies are “incompatible with life”. For about 30 seconds, I fooled myself into believing that I could compartmentalize this news, get on with my busy day, and deal with this once I got home from work. We had an invited guest lecture from my specialty who had just given a talk on recent advances in the treatment of anaplastic thyroid carcinoma, and I was scheduled to moderate a clinical vignettes session along with our guest right after that presentation. Interestingly, her talk focused more on resilience than it did on cancer; in retrospect, that topic was more relevant that I could ever have imagined.
The drive home was a blur—thank God for muscle memory. By the time I pulled into our driveway, I had already scheduled an appointment with a genetic counselor and called my husband to make him aware of the news. When I got home, we just sat on the bed in our room for a while, in complete silence; we both wanted to say everything was going to be ok, but deep down we both knew that it was not. Instead, we simply embraced one another, then braced ourselves for what was to come.
The next several weeks were filled with imaging studies and obstetrical appointments, further confirming what we already knew–our son had Trisomy 18, and his chances of making it to term were slim to none, particularly because he was a male. We searched incessantly for “good news,” any information that showed one of these babies surviving, even perhaps thriving, despite their diagnosis. I joined multiple social media groups, consisting of mothers who had children born with a rare trisomy; many had become “angel babies,” but there were still some who were indeed living, and at various stages of life. The road was in no way painted picture perfect, but at least there was hope.
One of my favorite books as a child was a Sesame Street book entitled, “There’s a monster at the end of this book!” Throughout the short story, Grover (and my parents) tried everything he could to keep me from turning the page and facing this “monster.” But alas, my curiosity always got the best of me, and I always turned the page. To my delight, the monster at the end of the book was none other than Cookie Monster. I remember bursting out in laughter and demanding my parents to read the story again and again…the end of my pregnancy felt very much like that book. I felt like a monster was approaching, and as long as my baby was in my womb, he was safe. Unfortunately, I knew I could not keep him there forever, and even worse, the monster at the end of our story was probable death, not some loveable cartoon character. And not even my own death (that I could come to terms with), but the death of our innocent baby boy; the son we prayed for, the one who would make our daughter Abigail a proud big sister.
August 19th, his due date, came and went, and still no labor ensued. We had already agreed to present for induction that weekend in the event this would happen. Delivery was as uneventful as could be expected; I labored silently in the bright lights of the operating room—this was in case an intervention was immediately required. When he entered the world, we briefly heard him cry before he was carried off and intubated, an intervention we had agreed upon. We were at his NICU incubator as soon as I could get there; and there I remained, daily for the next 70 days of his life; the entirety of his life.
The depression did not hit me right away, but rather was more a gradual disengagement from the world around me. Ashamedly, hugs for my husband and daughter were performed out of rote obligation, patient care remained a means of escape, rather than a genuine passion, and self-care was not a priority. I don’t think I ever became suicidal, as in, I had pondered any plans—rather it was a lack of concern as to whether each night I went to bed, I would wake up the following morning; if I did, then the day would go as the days prior; if I didn’t, I was equally fine with that.
As with all other life-changing devastations I have experienced (a personal diagnosis of cancer during residency, the sudden death of my father after all my training was completed), my faith in God, and support from family gradually restored my inner peace and acceptance of what happened to us. There’s a huge void that is left when you lose a child, and particularly when they are so young. There aren’t many fond memories to reflect on, rather, there are tons of dreams that will never come to fruition. And no matter how much I second-guess our decision making—should we have pushed sooner for his heart surgery? Should we have removed life support and at least allowed our family to meet him in person? —nothing will bring our son back. What remains is an unfillable void. But that is not all my story. I have a beautiful, healthy daughter, who has a sharp mind (and tongue) like her mother. I have a loving and supportive husband, who still sometimes allows himself to be vulnerable with me and cry over the loss of what we so dearly longed for. And I still have a son, he’s just in heaven now…his name is Asher.