Paola Rios of Richmond Hill, Ont. was living a nightmare. Her eight-month-old daughter Sofia had a cold that kept getting worse. Then her lungs collapsed, and she needed a ventilator to breathe.
Sofia was diagnosed with a rare life-limiting disease called Gaucher type 2. "That day we were told that Sophia would only have up to two years, if we took the long way," says Rios.
The long way could mean a longer life for Sofia, but it also meant pain and suffering. That's when they met Dr. Christine Newman, the palliative and bereavement care physician at SickKids in Toronto. Newman is one of about 15 pediatric palliative care doctors in Canada. She helps children and their families navigate through the end-of-life process.
When faced with the imminent death of their child, a parent’s relationship with hope can become dualistic, as conscious reality and denial co-exist, says Newman. It's her job to manage that hope.
She says, even "parents who have accepted what is happening, hope until that very last second that, as good as we are, this might be the one time that we're wrong."
Newman remembers the story from a mother whose daughter passed away at home, 10 years ago. Their pediatrician came to the house within an hour of the daughter’s death. One part of the mother’s brain, the logical part, knew that her child had died. But the hopeful part "expected the doctor would turn to her and say, ‘Oh, everything’s great, she's just having a good sleep. She's going to be awake in a few minutes.’"
That kind of hope, the kind that fights reality, can also affect parents’ ability to make a rational choice. Jonathan Bloomberg’s daughter, Sasha, was diagnosed with a rare genetic disorder at birth in 2004. She lived only two years.
Much of that time for herToronto parents was spent at SickKids undergoing invasive treatments aimed at prolonging her life. Despite being contacted by the palliative team, Bloomberg and his wife avoided talking to them.
Bloomberg says they allowed their hope to "build up to a huge balloon and it took off." So when Sasha’s condition grew significantly worse "we kept thinking she could possibly bounce back, and we did not have the palliative conversation."
"There was no question, no discussion, it just didn’t happen."
"It is never our goal as palliative care practitioners to say to a family, ‘We need you to stop hoping,’" says Newman. Instead, the goal is to manage hope and make it more realistic.
She uses the example of a child with a congenital heart defect. In the beginning, the child and family were hoping that surgery would be the answer. After a couple of operations, the child developed some complications and the surgery hasn’t really worked.
"So we're not going to be able to fix the heart, what can we be hopeful for now? We can hope that there may be different therapies that can help control the symptoms so that he or she can be comfortable and get back to school. They might be able to do the same things that they enjoyed before the surgery.
"If time progresses and the heart gets weaker, we hope that they will be able to enjoy time at home. Maybe they can still participate in family life, and they'll stay awake long enough to enjoy a movie. And they're able to have a conversation with their mom and dad without getting too out of breath.
"Gradually, these ideas of hope move toward what we would hope for at the end of a child’s life — for most families, that it's going to not include a lot of suffering — that we might be able to give them some sense of when it's happening, so that the people who are most important to the child are present."
"It's all about focusing on what it is we're hoping for, and appreciating that as circumstances change what we're hoping for needs to change along with that."
In the case of Paola Rios and her baby Sofia, needs changed very quickly. "To be honest with you, as a mother's instinct, the minute I walked in on Feburary 11th, I knew, I’m not going home with my daughter, even though my hopes never changed," she says.
That day Rios and her husband Andres Jaramillo made the decision to take Sofia off life support. Rios says, "we didn’t want to be selfish, we took the decision of letting her go, and having peace."
Newman and her team then focused on meeting the hope that Sofia's "dying process be one of comfort and dignity."
"If we didn’t have Dr. Newman and her team … we wouldn’t be able to talk about Sofia the way we do today … they have the right tools for you to try to cope with your pain, and with your decision, throughout the process," says Rios.
Sofia died at 10:21 a.m. on Feb. 11, 2011. Her mom and dad lay on the bed, held her between them and hugged her until she took her last breath. Sofia was 10-and-a-half months old.