Winnipeg family says palliative care gave them time with dying daughters

Ashley and Hope Allen were diagnosed with the same rare genetic disorder. They died five months apart. Their parents believe palliative care gave them time with their daughters they wouldn't have had otherwise. Both girls died at home.

Ashley and Hope Allen died at home, 5 months apart

Hope and Ashley Allen were diagnosed with the same rare genetic disorder and died five months apart. 2:24

Ashley loved pink. Hope loved purple.

Their younger sister, four-year-old Mira, draws a picture of her siblings with their favourite colours.

Mira believes they are both dancing and playing in heaven.

Ashley and Hope Allen were both born with a rare genetic disorder that affected their brains.
Hope, left, and Ashley Allen were diagnosed with the same rare genetic disorder and died five months apart. Both girls at home. (CBC)

Their parents, Jolene and Alex, knew something was wrong when Ashley was two months old. They saw what looked like a seizure.

"So we took her into emergency and everything began from there. She started having more and more seizures," Jolene Allen said.

"They did the MRI and it showed she had a small brain. Not enough grey matter, not enough white matter."

The seizures continued. When Ashley was four months old, they got the devastating news. The neurologist didn't expect Ashley to live more than a few days.

Jolene and Alex decided to take their daughter home from the hospital and care for her with the help of palliative care.

"Palliative care at home made a big difference in terms of Dr. Mike Harlos and his team would come over and see how Ashley was doing when things were getting worse," Jolene said. 

Ashley was limp, couldn't hold her head up and couldn't walk or talk. She was fed with a tube. Sometimes, Jolene said, they could get a smile out of her.

"You could bounce her on your knee and she liked that."

When Ashley was two, Hope was born. 

"There was no way to check in utero if the baby was affected. We got the phone call that she had the disease. That was devastating," Jolene said.

"As you can tell by her name, Hope, we were really hoping for a healthy baby. That's not what we were given. And yet it was still a blessing. She was an incredible child with such amazing smiles."

Read more stories from Marianne Klowak's series:

Emotion-packed marathon

Jolene describes their time as parents as a marathon packed with emotion. Both girls had seizures, were tube-fed and were on multiple medications.

The workload was staggering. Relief came with help from respite workers, a palliative care team and trained university students.

"Watching them suffer, have seizures, in the midst of them watching them smile and having their joyful days, your emotions are up and down. They are up and down because you don't know which day is going to be their last," she said.

Jolene Allen says given the public discussions about physician-assisted suicide, it's not an option she or her husband would have ever considered. (CBC)
"Palliative care is just that. Six years of waiting. You don't know how long it is going to go on. And then you have the pressure of all the work."

Even though doctors at the hospital told the family Ashley would die shortly after she turned six months old, she lived until she was six years old. Ashley died at home with her parents.

"We didn't know what her dying moments would look like. I felt we were so blessed to both be there. We both turned her over and she took her last breath," Jolene recalled.

"We watched her and Alex said, 'Is she going to take another breath?' We were waiting for it. And she didn't. And it was just like a letting go. Very peaceful. It was beautiful. We didn't know what to expect. But I am glad we were both there. It was such a blessing."

The Allens say without palliative care, they wouldn't have had Ashley for six years.

Five months after Ashley's death, Hope died at home. 

Finding strength through faith

The Allens say their faith is what has helped them through caring for and burying two children with the same rare disease.

"I think it's the grace of God. I think the strength that comes through prayer," Jolene said. "I don't think I did it on my own. I know who I am. I know my weaknesses. He gave me strength."

They said given the public discussions about physician-assisted suicide, it's not an option they would have ever considered. At this point, the Supreme Court ruling only applies to competent adults with enduring, intolerable suffering who clearly consent to ending their lives. But experts are concerned that may be expanded.

"It would never have been an option. Their lives were valuable, not because they could do things or because they accomplished things. They were just as valuable as any other child who could do things," Jolene said.

"I knew they were valuable just because they existed."

Jolene said it was really difficult to watch their suffering, struggling with daily seizures and suctioning them when they were choking. 

"Their suffering, to deal with their suffering, the answer isn't death. I really struggled. But that's when I loved them. That's when I ignored the house and really held them and sat with them," she said.

"When Hope went through days of vomiting,  I called my girlfriends, we would sit with their snacks and Hope in the middle with a suction machine, and ready to help her."

'A good death'

Jolene Allen believes her daughters had a good death, if there can be such a thing — surrounded by family who loved them, an older brother who would read them stories when he got home from school.

"They were released of their suffering in a natural death. I would call that a good death in terms of what a blessing they were and that they were released from their suffering. Not in our time, or our definition of what needed to be done," she said.

"As a parent, I can't be the one who decides what day my child dies. I can't live with that. But when her life ends naturally, that is peaceful. We both felt relief for her and relief from the workload being lessened."

The Allens are passionate about palliative care. It gave them time with Ashley and Hope, something they say they wouldn't have had otherwise.

"The dying process doesn't have to be awful. It doesn't have to be lonely and scary and unknown," she said.

"Ending someone's life isn't care. It is not. Where did the Hippocratic oath go in protecting the patient? I don't even understand how this has even been allowed to happen. There is a powerful force trying to push it and that is scary."

Their only regrets? They wish they had held their children more.

"It makes me really sad. There is a deep sadness for some people the answer is to end life by lethal injection, when the opportunity is there to provide them with good medical care and good comfort care and to walk that journey with them," Jolene said.

"It is hard. It is hard to walk that journey with someone who is suffering and watch them. That is the sacrifice we make because we love them."


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