Maria Hinds just celebrated her first birthday in Toronto’s Hospital for Sick Children. By rights, she should have been at home in Yorkshire, where she and her mother could have enjoyed that special day with her father and seven brothers and sisters. Bur Maria, who has Down’s Syndrome, needed heart surgery and British doctors refused to perform the operation. They said it was “too risky” and not “economically viably” for a disabled baby and told Maria’s mother to “just take her home and enjoy her while we could.”
Celeste Hinds did not agree. She heard of another British baby who had the operation at Sick Kids, so she contacted the hospital herself and set about raising the $30,000 needed. TO get through bureaucratic red tape – a special visitor’s permit takes months to process – she went on a six-day hunger strike. That speeded up the process!
The seven-hour operation on September 12 was success and Maria has now gone home.
It’s a heartwarming story but not all disabled children receive medical treatment in Canada.
At the end of 1986, a newborn Down’s baby died in Montreal’s Children’s Hospital, after going almost 13 days without food or water. That baby, who also had heart problems, needed surgery to repair his esophagus. His parents refused the surgery and child welfare authorities did not intervene because they “didn’t consider a child in hospital to at risk.”
Dorothy Lipovenko, who wrote about the Montreal baby in the Globe and Mail, noted that it was a “common” case: “every day in neonatal units across Canada, parents and staff reach the agonizing decision to forgo life-saving treatment (surgery, antibiotics) for critically ill newborns.
Another story, one that ended more happily, is that of Nicole Enright of Appin, Ontario. Her mother spoke out earlier this year about what happened when Nicole was born with Down’s Syndrome 11 years ago. She needed surgery to correct an incomplete bowel, to which Laurie immediately agreed.
“But one of the doctors said out of the kindness of my heart, I should let her go,” Laurie Enright said. “Another one said she’d always be sick and we could maybe train her like a dog. Train, not teach. He said kids would ridicule her: I asked if she’d have emotional pain and they said she’d be full of emotion turmoil.”
Given 24 hours to decide, Laurie agreed to waive surgery. “I didn’t know what I was doing was wrong,” she said. “All I knew was I didn’t want the baby to suffer because I wanted her with me for selfish reasons. I honestly thought this was the kindest thing to do for her.
Nicole survived, and had the surgery, because the Children’s Aid Society stepped in. As soon as Laurie realized they had done the right thing she regained custody of Nicole. She says she does not blame anyone for what happened to her and her daughter. “It’s all based on ignorance, mine as well as theirs [doctors]. But I can’t understand how doctors, bright people, can be so ignorant about these things.
Laurie Enright is doing her best to ensure that some doctors know better: she lectures medical students at the University of Western Ontario twice a year. “I tell the interns they’re cheating people otherwise, you can grow through these children. I tell people who ask me about Nicole that you never know how strong you are until you have to be. I’m just a normal, ordinary person. That’s all you have to be to raise a Down’s child.
Celeste Hinds says she does not resent the doctors who would not help Maria. “I’m just happy that she’s all rights. And the thing that does make me feel very pleased is that just through simply doing what I’ve done for Maria, people have begun to ask questions.”
These questions must continue to be asked. It is not good enough to simply accept that parents are forced to make such life and death decisions in haste, without all the information to which they are entitled. And it is not good enough to accept that discrimination in medical treatment on grounds of disability it tolerated by Canadians.