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  • Writer's pictureJohn Lantos

Loving him meant letting him die

There is a complex episode near the end of Rob Delaney’s shockingly readable memoir, A Heart That Works, The book is about his son Henry who died of brain cancer at age two. It sheds new light on the emotional toll of caring for a dying child.

The episode is surprising because it isn’t primarily about Henry at all. It takes place after Henry has died and his Dad, an actor, has gone back to work. Delaney has a part in a movie in which another character is going to get shot in the throat. Delaney had read the script and knew that the scene was coming. He hadn’t thought much about it. But when it was time to actually shoot the scene, he started having flashbacks to some of the events that took place when he was caring for Henry at home.

Henry had a brain tumor diagnosed just before his first birthday. The tumor caused brain damage and Henry needed a tracheostomy because he was no longer able to swallow. Rob and his wife learned to take care of the trach at home. It wasn’t easy. Changing the trach, Delaney writes, required “both significant strength and fine precision” to pull the plastic trach tube through the surgically created “stoma” in Henry’s throat. The hole “was ringed with scar tissue as it endlessly tried to heal. The hole would try to get smaller over the course of the month and would sometime bleed during his tube changes. Sometimes it bled a lot. You’re holding your child down against their will; they can’t breathe; they’re somewhere beyond terrified and in pain. And you performed the action that made the blood they are choking on come out.”

Passages such as those capture the enormity of the tasks that we now routinely assign to parents of critically ill children. Parents have no idea what they are getting into. The story unfolds in real time as they try to take in shocking new information and adjust their minds to new realities. Many parents describe a kind of brain fog that envelops them as the grief short-circuits their usual ways of thinking. Delaney writes about that, too. “Grief drove a bus through the part of my brain where memories are stored. I forgot the PIN for my ATM card. I’d been using it for years. And it just evaporated from my head. I had to get the bank to send me a reminder. Sometime after Henry died, I got a call from a guy with whom I’d been working closely. He called to review some stuff. “Hey Rob, It’s Mark.” “Mark?” “Yeah, Mark.” I felt like I was being asked to find an individual lentil in a warehouse that a tornado had just blown through. “Mark, apologies, but I do not know who you are.” He eventually remembers, and explains how grief has fried his brain. Talking about it helps.

In the scene that so moved me, he has a similar moment of emotional self-recognition as he thinks about what it will feel like to watch a simulated gunshot to the throat. He remembers that Henry’s trach stoma was just about the size of a bullet hole. He remembers how it sometimes used to bleed. Contemplating the scene he was about the enact, he writes, “I was scared to the point that I could feel myself in danger of shutting down. With Henry, I had in fact seen blood issue forth from a bullet-shaped hole in the neck of someone I loved very much. I found myself feeling fuzzy and slow and afraid of the prospect of watching a world-class special effects team make blood blast out of a hole in a woman’s throat.”

He went to speak to the director about his concerns. He explained how the thought of the scene reminded him of Henry and his trach. They got it immediately. They offered to do anything to help. They suggesting rewriting the script so that character got shot in the face instead of the throat. Both the director and the showrunner looked “haunted.”

They didn’t rewrite the scene. Delaney made it through. Talking about it helped, he said.

The scene’s power came from the beautiful way that it conveyed the zig-zag process of recovery from emotional trauma. It did so not by talking about it, theoretically, but by showing us how the process plays out in the real life of someone dealing with both profound grief and the post-traumatic stress that so many family members describe after having a loved one in the ICU. When Henry was alive, Rob buried his own feelings of horror at the need to perform such procedures at home. It took the highly artificial circumstances of a simulated murder on a movie set to penetrate the psychological denial of his own feelings that he had so carefully cultivated. He himself was surprised when the feelings came flooding back. I was surprised, too, as a reader. I thought I understood what parents of children like Henry go through. I had care for such children and families. But this passage made me realize my own cluelessness about the layers of pain that go deep into the soul. And I cried for Rob, and for Henry.

Delaney writes movingly about the agonizing decision they eventually make, after Henry’s cancer returns, to choose palliative care over desperate attempts to prolong his life. “I briefly considered another surgery, and then getting radiation in Manchester, or maybe even a different “better” radiation in Florida or Oklahoma. But we just didn’t want to torture him anymore. It would have been more humane to take him up on the roof of the hospital and throw him off. Loving him meant we had to let the cancer spread and kill him. It was so fucking confusing.”

Henry’s doctors and nurses were glad that Henry wouldn’t be put through any more treatment. weren’t going to put him through any more treatment. They said they wished more parents would make that choice. “They helped us underline for us that though we were awash with pain, we were making a good decision based on our love for Henry.”

Not everyone was so supportive. One of Henry’s home health caregivers carers made it clear that she did not agree with the decision. She became quiet and withdrawn, pulled away, stopped answering texts, and didn’t come to Henry’s memorial service. She just couldn’t handle a very difficult thing, so she pulled the ripcord and left.

Delaney wants to describe both the bleakness and the hope. Like a surgeon with a scalpel, he knows that he has to hurt us to help us. His overall message is that life is tenuous, that death is always around us, and that knowledge of death should enable us to live each moment more fully. He manages to tell that story in a way that is new and fresh and will help both health professionals and family members who care for critically ill and dying children. Given the subject matter, it is a surprisingly optimistic story.

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