“Listen, I know how you feel.”
I am sure that many grieving families in the intensive care unit have scoffed, either openly or secretly, when they heard a physician say that sentence when faced with the imminent death of their loved one. I am sure that, in their minds, they were saying, “How do you know how I feel?” Indeed, we try hard to be as empathic as possible, especially in the ICU, where I work as a Critical Care specialist and Medical Director. Yet, in my case, I really do know how these families feel. I lost my daughter in June 2009.
My eldest daughter was diagnosed with Ataxia-Telangiectasia, a genetic disorder characterized by progressive loss of balance and immune system problems, at the age of six. Most kids with A-T are in a wheelchair by the age of ten, and they rarely survive their teens, succumbing to either infection or cancer. Our daughter had the most severe manifestation of this disorder: she was indeed wheelchair-bound by the age of ten, and she was plagued by almost constant bacterial infection. She was even on daily antibiotics for the last two years of her life.
At the age of 12, she was diagnosed with diffuse large B-cell lymphoma, a type of blood cancer, and it was already widely spread at the time of diagnosis. Thus, we embarked on a modified chemotherapeutic regimen, as children with A-T are more susceptible to the effects of chemotherapy due to the underlying genetic defect. And it was a grueling six months, with my wife and I “tag-teaming” various hospital stays and oncologist visits. There were many a time I took overnight call at the bedside of my daughter in the hospital.
Finally, at the end of May 2009, came the “maintenance” phase: the easiest and last cycle. We were greatly relieved, and we looked forward to a great summer without chemotherapy and its side effects, without hospitals, without oncologist visits.
Horrifically, however, it would never come to pass.
During that last cycle, everything that could go wrong went wrong. The methotrexate, one of her chemo drugs, would not leave her system; she had relentless mouth inflammation and diarrhea; she had terrible pain, so much so that she knew “Dilaudid” by name. No 12-year-old should know “Dilaudid” by name.
Then, the fevers started and would not stop. Despite multiple antibiotics, administered early, the fevers would not stop. Saturday morning, June 8, something changed: it is when the E. Coli got into her bloodstream. She developed septic shock and multiorgan failure. She had to be transferred to a university hospital for possible hemodialysis. Dialysis never happened because, by 12 PM the next day, she had died.
Losing a child has been the most horrific thing I could have ever endured. I knew, way back when she was diagnosed, that I would eventually have to face that day. I even played the movie of her death in my mind dozens of times. When I was finally faced with it, however, it was too much to bear, and I broke down in devastation. It has not been easy, especially having to work in a very similar environment in which my daughter died. But, I have to move on: too many people depend on me, and thus I cannot afford to give up.
And so, when I see patients’ families struggling with the imminent death of their loved one, I share my story. I tell them that I truly do know how they feel: I lost my daughter in an ICU very similar to this one, and that I know how hard it is. I try to counsel them that it will hurt…hurt a lot. But, if their loved one can pass in dignity – with family and friends around them – it is the best possible outcome, just like with my daughter.
Without exception, the patients’ families are grateful. They express their sympathy – for which I am not looking – and it makes their pain a little easier to bear. Once, after I shared my story and told a son and daughter that I understand that letting go is difficult, they broke down in tears. But, it also helped them cope with the loss of their mother. That I could help them through this terrible time in their lives made me feel all the better as well.
I would never wish losing a child on anyone, not even my worst enemy. The grief, at times, is so suffocating that I cannot breathe. But, I refuse to wallow in that grief. Every day, I try to bring some good out of something that is so terrible. And when I have done that by sharing my story, it has helped so many people. For this, I am truly grateful.