My darling friend, Nakki, is making waves, complete with her port and saline solution in hand, in the Toronto Sun. Way to go, Nakki! She is one of the bravest and most fearless friends I have; I admire her strength and courage, and I love that crazy awesome fight she has in her. I support and love her. Here’s a giant high-five to getting attention for EDS in a large newspaper and online, standing up (POTS and all!) for her medical needs and a surgery she was already approved to have until it came to cutting time, and being a survivor and hero. As she always tells me, I say it back to her: just keep on swimming, Nak. You will prevail and help many others in the process.
*If you wish, click on the headline below to comment on the Toronto Sun’s article and show your support for Nicole Ottaway!
Nicole Ottaway is a young woman with a rare, serious disease — so rare, in fact, that it took doctors years to finally make the diagnosis.
Ottaway has Ehlers–Danlos Syndrome (EDS), a genetic disorder that affects the connective tissue, caused by a defect in the synthesis of collagen.
The incurable disease affects the digestive and cardiovascular systems, causes spinal deformities as well as a wide range of other symptoms.
In light of her disorder, Ottaway, 30, has made the decision not to have children.
For three years, she searched for a doctor willing to perform a tubal ligation operation.
She was turned away. Most doctors refused to perform the surgery because of her age.
Others were reluctant to do it because of her complex medical history.
Finally she found a doctor who’d do it. The first appointment went well. Then the doctor’s office phoned with the bad news.
The doctor only had operating privileges at St. Joseph’s Hospital — and they wouldn’t allow a sterilization procedure to take place there because they’re a Catholic hospital.
“I don’t think they realize how dangerous being pregnant and having babies is for people with EDS,” Ottaway told me in an interview in her west Toronto home this week.
“I have a feeding tube in my chest. My whole neurological system is a mess. There’s no way I can handle being pregnant,” she said. “No way.”
When she initially requested the sterilization procedure, Ottaway was in a relationship. She still hopes one day to have children — but only if she can adopt.
In a report on her decision to have her tubes tied, the doctor had this to say:
“Today we discussed permanent sterilization. I do believe this is indicated since she is high risk for fetal genetic defects as well as medical complications during pregnancy.”
The hospital still refused — and Ottaway wasn’t allowed to appeal the decision.
Ottaway is recovering from stomach surgery, needs canes to walk and sometimes has to use a wheelchair. She used to teach autistic and developmentally delayed children, but has had to quit work. She’s dislocated her neck many times, gets frequent headaches and migraines and will likely need spinal surgery.
Ottaway was told to go to another hospital, but that’s not an option, since she can’t find another doctor willing to perform the operation.
“Everyone said I was too young and I was making the wrong decision.”
Besides, she believes she’s the person best equipped to make such a personal choice.
A spokesman for St. Joseph’s refused to comment specifically on Ottaway’s situation, but directed me to the Health Ethics Guide that governs Catholic hospitals.
It says: “Direct sterilization, whether it is permanent or temporary, for a man or woman, may not be used for the regulation of conception.”
It directed readers to another section which said, “It is unethical to cooperate formally with an immoral act, i.e. directly to intend the evil act itself. But sometimes it may be an ethical duty to cooperate materially with an immoral act, i.e. one does not intend the evil effects but only the good effects, when only in this way can a greater harm be prevented.”
Ontarians overwhelmingly rejected faith-based schools, yet we have religious rules governing publicly-funded hospitals. People of all faiths use these hospitals, most of them unaware that they’re subject to the dictates of the Catholic church.
Ottaway’s frustrated by what she calls a “taboo,” about a young woman getting her tubes tied.
For her, it’s not a moral issue. She has no choice.
It’s a matter of life and death.