The Human Face of Hospital Wait Times - Olivia Vander Schelde and Marjorie Allt
Tuesday, May 23rd, 2006I have just been forwarded the following story by an old high school friend of mine. It is about a family that has waited agonizingly long for the surgery their infant toddler needs.
This story is in sharp contrast to what I experienced at the Guelph General Hospital when I took my mother (Marjorie) there for a “hernia” . The care and the concern of the Emergency Room Staff and the Hospital Staff in general was excellent. When the hernia was discovered to have caused a life threatening bowel blockage, my mother was prepped and sent to surgery forthwith. The staff at the General saved my mother’s life - something for which my brothers and I are grateful.
Our medical practicioners are a valuable community resource. They work hard in very difficult circumstances. Both my mother’s situation and that of the toddler Olivia (below) attest to the compassion and dedication of nurses, doctors and other medical professionals.
We owe them a) thanks and b) our activism to improve a system that is underfunded and which only seems to be promoted by politicians around election time.
The holiday delays a life-saving operation for a toddler with a brain tumour.
By RANDY RICHMOND, LONDON FREE PRESS REPORTER
Olivia Vander Schelde toddles around her home north of London like any 18-month-old child. From couch to footstool, from one parent’s lap to another, she gets around fine. But it won’t last.
Olivia is carrying a tumour the size of a cherry on her toddler-sized brain stem. It already makes her constantly throw up and, if left untreated, will affect her ability to move and breath, eventually killing her.
London’s renowned pediatric neurosurgeon, Dr. Adrianna Ranger, wants to do the delicate surgery — booked for at least 20 hours — on little Olivia as soon as possible. But the earliest she can operate is June 12.
That’s because, says Olivia’s mother Kimberley, Ranger only gets the operating room at Children’s Hospital of Western Ontario on Mondays. The hospital will not allow an operation on Victoria Day, pushing Ranger’s procedures back.
‘It’s crazy,” says Sam, Olivia’s worried dad.
Hospital officials were not available yesterday to explain the delay. They were off for the holiday. The Vander Scheldes agreed to tell their story so people know how tight hospital budgets can affect people’s lives.
“She is our baby, our world,” Kimberley Vander Schelde says.Kimberley Vander Schelde knows what the May 2-4 weekend used to mean. “Growing up, May 2-4 always meant camping, having fun with friends, and barbecues and getting together with families.”
Now it has a different meaning. This year, the holiday Monday means surgery to save the life of her 18-month-old daughter Olivia has to be delayed long past what the pediatric neurosurgeon wants because — it appears — operating rooms at Children’s of Western Ontario are too expensive to run on holiday Mondays.
“Olivia’s life hangs in the balance and we don’t know what to do,” Kimberley says. “The nurses are frustrated. The doctors are frustrated. The hospitals could right now make a decision. Olivia could have the surgery this week. They are not compassionate enough.”There was no way yet to get the hospital’s side of this story. No administrator was available to the media because it was the long weekend, said London Health Sciences Centre spokesperson Babel Hatje.
So here is just Olivia’s side of the story. From the day Olivia was born, Nov. 8, 2004, Kimberley suspected there was something wrong. “I started going to the doctors right away saying something just wasn’t right. She was always crying.” Everyone told her the same thing — babies cry. “This is my second child,” she told them. “My first one wasn’t like this.” By her first Christmas, Olivia was in considerable pain. She threw up like clockwork each morning. Kimberley took her to doctors, who changed her formula. It helped for a while, but by Olivia’s first birthday last November, she was losing weight.
Frustrated, Kimberley went back to the doctors. “Enough is enough,” she told them. “She is losing weight. She is throwing up. Something is definitely not right.” A battery of tests followed. In February, Olivia was to get bloodwork done, but she began throwing up and couldn’t stop. The family took Olivia to the hospital in February for what they hoped would be one night of observation. That one night turned into seven weeks. Olivia was put on a feeding tube as doctors tried to figure out what was wrong with her stomach.
Meanwhile, Kimberley noticed something odd about Olivia’s spine. “It just seemed off.” Olivia got out of the hospital but only a few weeks later got a flu bug. Back she went to the hospital. Dr. John Howard, a gastroenterologist, noticed the little girl tilting her head back. The spinal cord isn’t his area of expertise, but he knew something wasn’t right. He arranged for a CT scan.
“Thank God for that flu bug,” Kimberley says now. The CT scan was done last week and showed there was pressure on the brain. Olivia was tilting her head back to ease that pressure. An MRI was done the next day to determine what exactly was on her brain stem. After the MRI, a medical team called Kimberley into an office. “Oh God,” she thought. “This can’t be good.”
She walked into a room of grim faces. The MRI showed a tumour, slightly bigger than a cherry, in her brain stem, pressing on her spinal nerves. “It’s ironic,” Kimberley says. “The tumour is shaped in a perfect teardrop.” The tumour was probably growing even as Olivia lay in her mother’s womb. The little girl’s body grew around the tumour. That may have saved her life, keeping the tumour in check. But the pediatric neurosurgeon, Dr. Adrianna Ranger, told Kimberley she didn’t want to wait any more than two weeks for surgery. “Even though it is growing slowly, you never know when it is going to take that next little growth that is going to . . .” Kimberley says, her voice faltering.
There’s a snag, though. Ranger has regular operating room time booked on Mondays. Yesterday, Monday, May 22, was a holiday. The hospital doesn’t open the operating room on the holiday, Kimberley says. As she understands it, Ranger can’t get those hours back. Olivia isn’t the only child needing life-saving surgery. The missed Monday means she can’t get into the operating room until June 12. “It is three weeks from now and they said they didn’t want to wait any more than two,” Kimberley says. The family could send Olivia to Toronto, but there’s no guarantee surgery would come sooner. Sam has taken off work to be with his wife and children. It’s going to be tight for a while. “I’ll be off as long as I need to,” he vows. Eventually, the tumour will make Olivia immobile. In fact, it’s already so big the doctors reviewing the MRI thought the girl was already immobile.
But at her parents’ home north of London, the big-eyed girl with a shock of red hair plays with Moe the cat, cuddles big sister Holland, 4, and insists on navigating around the furniture to get at a reporter’s shiny tape recorder. When she gets hungry, she walks over to the feeding machine she still uses and tugs on the cord.Kimberley is getting no sleep thinking about the operation.Surgeons are going to take off the back of the skull, and the backs of four upper vertebrae, to get the tumour out — on a small child any average-sized adult could carry in one arm. “She could come out of this and not breathe on her own any more or ever walk again and that scares us to death.”In an interview on a grey Victoria Day weekend, Kimberley maintains her composure, fuelled by frustration. When she stops to look at Olivia, the composure falters.
“She is . . . ,” the tears come before the next word, “precious.”"She is our baby, our world. The idea she might not come out of this the way she is now is terrifying.”Kimberley vows the family will get through this, but wants Londoners to know what’s happening in their hospital.”Tell them our philosophy, Holland,” she says to her other daughter.
“We’ll get through this as long as . . .” Kimberley coaxes. Holland’s small voice takes over:”We’re together.”
WELL WISHES
Well wishes for Olivia Vander Schelde can be sent to: olivia@cherub.ca, or by calling 519 461-9204.