Living With Dying articles
Helping A Child To Die
By Leah Carey
Feb. 14, 2017
Helping a loved one to die is hard, no matter how or when it happens. But helping your child – the very embodiment of your dreams for the future – to die is a horror unthinkable for most people.
For Nancy and Bill Hartwell of Lyndon, the unthinkable has happened.
After spending six years with cancer, their 21-year-old son Zachary died in October 2016.
Their first sign of trouble was in the fall of 2010 when Zach was 15. “We kept taking him to the doctor and they kept telling us it was the flu; one time they told us he was anorexic because he was losing weight,” Nancy said.
In February 2011, Zach came into his parents’ room in the middle of the night and said he couldn’t feel his arms. A doctor finally suggested a brain scan and discovered the tumor that was causing Zach’s physical problems.
Over the next five years, the family spent countless hours and days and weeks in and out of hospitals. Zach got better, then he got worse. He went on medical trials that helped for a while but didn’t stick. Various procedures and side effects left him without the ability to stand and balance, but with a tracheotomy that took his singing voice.
“His body disconnected from his brain,” Nancy said. “His brain didn’t know where the muscles were.”
No matter what ups and downs the journey took, the Hartwells kept the faith that the cancer would be eradicated and Zach’s life would be a long one.
“In our minds, we had planned that the rest of our lives were going to be taking care of him … helping him to have as normal a life as possible,” Nancy said. “Your brain will not let you go there, that your child is going to die. I think it’s a self-defense mechanism and it doesn’t go there. So even when your logical mind knows that the odds are very low, your parental instincts are telling you: But I’m going to save him because that’s my job.”
An unexpected death
That bit of the parental brain that wouldn’t allow Nancy and Bill to contemplate the potential of Zach’s death left them feeling blindsided when the end came.
“We didn’t think he was going to die. Until he had the seizure when we were in Hanover and the doctors called us in and told us there was nothing else they could do for him, we didn’t believe it. We really didn’t believe it,” Bill said. “We had eight or nine days after we found out no, he wasn’t going to make it. So to us it was sudden.”
Zach had been intubated when he had the seizure that was the beginning of the end. He constantly pulled at the tubes and wires, trying to get them out. Then the doctors came in and told Bill and Nancy that Zach wasn’t going to make it.
“We went back in after we met with the doctors,” Bill said. “Nancy talked to him and said, ‘You’re not going to make it. You’re going to die.’”
“We were honest with him every step of the way,” Nancy said. “They said he’d just get tired-er and tired-er and tired-er until he slipped into a coma and then he would pass. And that’s exactly what happened.”
They were able to release him from the hospital so he could die at home.
“He woke up for about an hour,” Nancy said. “Before he went to sleep, he told me goodbye. And he never woke up again.”
This whole series is focused on how we help our loved ones to die, but perhaps when speaking about a child with a terminal illness, the focus needs to be different. In fact, the Hartwells don’t even want to discuss that topic.
“How did we help him to die? We did the opposite. We helped him to live,” Nancy said. “That was the important part.”
Rev. Skye Murray is a board certified chaplain at Dartmouth Hitchcock Memorial Center in Lebanon, New Hampshire. As part of the CHaD (Children’s Hospital at Dartmouth-Hitchcock) team, she has seen many families go through the process of losing a beloved child.
“When we talk about a child that’s dying, what is dying is not just the person you love more than anyone else in the world, it’s also the future life that you’ve imagined with that child,” Murray said. “Children are never in isolation, so it’s a disruption of an entire system. That has lots of bearing on the other siblings in the family, the extended family, and whole communities.”
In addition, she said, if the child is school age, entire school and extracurricular communities will feel the ripples of loss.
And at the center of it, once again, are the parents.
“Fundamental to who parents are is this fierce protection of their child. We are to love and care and protect them so they can be adults. What happens when we can’t do that because of disease and illness? It’s a complete disruption and disorientation to a way of life to see a child die,” Murray said.
Murray said that parents can move forward from the loss of a child, but it’s a long process.
“People talk about time healing wounds,” she said. “I’ve never talked to a parent who is bereaved who isn’t still thinking about their child every day. That doesn’t mean they don’t go on to find meaningful life, but I think they need a lot of support to go on with life without their child in it.”
While people tend to gather around the family during the first days and weeks after a child’s death, the family continues to need support on a longer-term basis.
“Often it’s in the first couple days or weeks after a child dies that people rally. What I hear from people is that they need the love and support to continue,” Murray said.
She said that one thing that can help a family move forward is to create a memory book or memory box to honor the child.
“I talk a lot about legacy building. It continues to tell the story of the child and continues the family having this connection with their child,” Murray said. “The legacy of these children is that love never dies.”