The snow flakes falling from the sky Wednesday morning seemed to mark the seconds for a young Prince Edward County native facing the fight of her life.
And time is at premium for Andrea Taylor.
The 31-year-old Picton area resident and former special education teacher, who has taught in Calgary, Vankleek Hill, and at the Quinte Mohawk School, has been living at her parents’ home since December 2016 when symptoms from a congenital birth defect finally forced her from her job and into the daily care of father Keith and mother Valerie.
Taylor suffers from a condition called intestinal malrotation and she knows the rare condition well.
Due to a lack of experts on adult intestinal malrotation in Canada, Andrea has had to research her condition and source a surgical solution before the symptoms eventually kill her.
In a normal gestation, the intestines of a fetus will rotate and position properly prior to birth.
“Mine didn’t,” Andrea told the Gazette.
At three months old, Andrea had a life-saving surgery called a Ladd’s procedure — named after Dr. William Ladd, a prominent pediatric surgeon of the early 20th Century.
The operation involves a separating of the large and small intestine that alleviates malrotation.
During the operation, surgeons also removed Taylor’s appendix as it was on the wrong side of her abdominal cavity.
People undergo Ladd’s procedure as infants and generally never have any serious health issues as adults.
Taylor was not so lucky.
“There’s all different levels of severity and sometimes people only find out about it during a procedure for another issue as they haven’t had any malrotation symptoms,” Taylor explained.
But she did have symptoms. Severe ones that impacted her ability to live a normal life.
Despite moving back home and into the care of her parents, her conditions worsened, leading to her to research any resource she could find.
The power of social media played a role in the form of a malrotation Facebook group that offered her a chance to connect with others that had undergone the Ladd’s procedure.
“I kept thinking there’s no way I’m the only one who has these severe symptoms and not have a system that’s functioning properly,” she said.
She soon learned she was right.
While rare, drastic complications from malrotation not addressed through Ladd’s procedure can manifest into a shutdown of the digestive system.
By spring, Andrea was only eating soft foods and was soon down to a liquid diet.
Currently, she’s on a intravenous nutritional program and hasn’t had a bite of food since July.
Her system is so compromised, she can only manage 100 mL of water a day.
Andrea’s research led her to Dr. Kareem Abu-Elmagd and the internationally renowned Cleveland Clinic.
Abu-Elmagd is the only physician that’s investigated people who have had Ladd’s procedure and have had severe issues after undergoing the surgery.
“It saved my life and it’s the best they could do at the time,” Taylor said of the Ladd’s procedure. “It gave me 20 good years of pretty normal life growing up, but it didn’t correct the issue.
But Dr. Abu-Elmagd can.
Referred to as gut rehabilitation, Abu-Elmagd essentially takes the entire digestive system out of the abdominal cavity, removes any suspicious parts of the intestines and basically performs an auto transplant, placing every organ back in its proper place.
Because of the rarity of this condition, Ontario doesn’t have any specialists that offer this type of surgery or even a physician that can definitively speak to it.
But in nearly 50 cases, Dr. Abu-Elmagd has saved a patient and allowed them to return to regular life.
The Taylor family remains hopeful that the Ontario Health Insurance Plan will allow for out-of-country funding for Andrea to travel to the Cleveland Clinic and undergo this life-saving surgery.
The family spent six months compiling an application package that included scans, physician’s letters and other supporting documentation but the plea seems to have hit a roadblock at the Ministry of Health and Andrea Taylor is running out of time.
Keith said there’s been great support from Mayor Robert Quaiff, Prince Edward-Hastings MPP Todd Smith and even Hastings-Lennox and Addington MP Mike Bosio who have contacted provincial and federal health ministries.
In fact, the Prime Minister’s Office has been in contact with the Taylor family three times in the last week to get an update on Andrea’s condition and process.
“They’ve all been amazing trying to move our application along and speak to the right people. We’re still hopeful but people fall through the cracks and that’s what might happen here,” Keith said. “If there was a doctor qualified to comment on this procedure in Ontario, he would do the surgery but there’s no one here that can do it.”
“It shows you how vulnerable you can be if the health system can’t work for you or if you don’t fit the criteria,” Valerie added.
“Our health system is wonderful for common things but rare issues that don’t fit in flow charts are a problem and I’m living proof of that,” Andrea stated.
With time running out, the Taylors have decided to make Andrea’s condition public and see if the community can help them secure the funds needed for the procedure.
“We have to do what we have to do,” Keith said. “We have a lot of friends in the U.S. and people there would tell me ‘If we get sick, we could lose our house’ and I used to say ‘Move to Canada’. I guess I shouldn’t have said that but I had no idea people could fall through the cracks like this.
“If we have to sell everything we own, we will,” he added.
By Day 6 of a GoFundMe campaign, over $30,000 has been raised for the medical costs that are expected to be $250,000 ($200,000 USD) and would cover the surgery, 11 days in hospital recovering as well as some potential complications.
Keith has been blown away by the support so far.
“The community has been so outstanding and so supportive,” Keith said. “People have been stopping at the house and dropping off cash and cheques and we’ve included that in the tally on the Go Fund Me page.”
Former classmates, teachers, friends and neighbours have chosen to support Andrea Taylor since a conspicuous sign was erected at their home just east of the roundabout
Andrea grew up riding horses and was a varsity cross country runner while attending Trent University in Peterborough and hopes to return to work and her passions after surgery.
“It’s very hard when you go from being an athlete and everything stops,” she said. “I really miss working and my job…I love teaching special education.”
If able to undergo surgery, the prognosis is generally positive.
One woman who was told she would never have children is expecting after receiving malrotation surgery at the Cleveland Clinic.
Others have returned to outdoor activities such as distance running.
“And they can eat and actually enjoy food once again,” Andrea added. “You don’t realize what an impact food has on your life once its removed. Even the social impact of not being able to sit down and talk over a meal.”
And the Taylor family has plenty to talk about.
Andrea admits that without the support of her parents — Keith is retired from Quinte Conservation while Valerie taught many years at the Quinte Mohawk School — she likely wouldn’t have made it this far.
“It’s been a very difficult year and it’s awful to watch your parents give up so much for something that’s out of your control,” Andrea said. “My retired parents have had to become caregivers.”