Winnipeg family says palliative care gave them time with dying daughters

Ashley loved pink.Hope loved purple.

Their younger sister, four-year-oldMira, draws a picture of her siblingswith their favouritecolours.

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.

Their parents, Jolene and Alex,knew something was wrong whenAshley was twomonths 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 Allensaid.

"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 fourmonths 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 hospitaland care for her with the help of palliative care.

"Palliative care at home made a big difference in terms of Dr. MikeHarlosand 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 andcouldn't walk or talk. She was fed with atube. Sometimes, Jolene said, theycould 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 inuteroif 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, wewere 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."

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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.

"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 familyAshley would die shortly after she turned sixmonths old, she lived until she was sixyears old. Ashley died at home with her parents.

"We didn'tknow 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 sixyears.

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 caringfor 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 mestrength."

They said given the publicdiscussions about physician-assisted suicide, it's not an option they would have ever considered. At this point, the Supreme Courtruling 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 saidit was really difficult to watch theirsuffering, 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 withtheir snacks and Hope in the middle with a suction machine, and ready to help her."

'A good death'

JoleneAllen believes her daughters had a good death, if there can be such a thing surrounded by family who loved them, anolder 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 Allensare passionate about palliative care. It gave them time withAshley 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," Jolenesaid.

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