Indomitable spirit

Family faces financial hurdle for daughter’s life-saving surgery

Andrea Taylor has a proven track record in overcoming adversity. As a newborn, she was in constant pain and needed a team of eight caregivers to provide round the clock care. At age 12 weeks and after multiple hospital visits, she was finally diagnosed with a condition called volvulus, or twisted bowel syndrome— caused by her intestinal malrotation, a congenital birth defect. She underwent emergency surgery to separate her large and small intestines, an operation that saved her life. Now age 31, she again needs specialized life-saving surgery.

Typically, infants who undergo the surgery have few, if any, residual effects later in life. Not so for Andrea. In her later high school years and through college, she experienced increasing intestinal problems, as well as bouts of vomiting. Despite these problems, Andrea enjoyed an active lifestyle, competing in equestrian events, reaching the Eastern Ontario finals in swimming, and becoming a member of the Trent University varsity cross-country team. “It was a bit of a joke that my times would be a lot better if I didn’t have to stop and throw up during races,” she says with a small laugh. “But it was because the movement with my [intestinal] system would cause me to be sick.” She graduated from Trent and went on to become a special education teacher, last working in Calgary until December 2016 when increasing health problems prompted her parents to persuade Andrea to return home to Picton.

During 2017, Andrea’s condition steadily worsened. “I was very ill, trying to force food down,” she says. “My ability to tolerate food was slowly declining.” She went on a low-residue diet, then on to soft foods and then to a completely liquid diet. Her doctors were skeptical that her problems were related to the surgery she had as a baby, suspecting Crohn’s disease or something similar. Andrea took it upon herself to find out more about her condition. “I kept thinking there’s no way my system, being set up the way it is, can function properly,” she says. “My large intestine is kind of all squished in there and there’s lots of kinks and twists. I knew there was something related to my condition, so I started to look online.” After extensive research on the medical literature, she decided to look on social media and found a Facebook support group on intestinal malrotation— exactly Andrea’s condition. The members are from all over the world, but principally the US and there were quite a few members who had undergone gut rehabilitation surgery offered by Dr. Kareem Abu-Elmagd, a specialist in Cleveland.

Early in 2017 she contacted Dr. Abu-Elmagd, and was told that he would be able to help her. After obtaining a high-resolution MR Enterography scan in Gatineau (at their own expense, as Andrea did not meet the criteria to get one done locally) she and her parents, Keith and Valerie Taylor, made the trip to Cleveland for a consultation in October. She was told that she was a good candidate for the surgery, which would place her intestinal organs in the anatomically correct position. Upon returning to Ontario, she and her parents began the process to apply for OHIP to cover the cost of the operation. It is a long, intricate and detailed process, requiring endorsement from Andrea’s gastroenterologist and a recommendation from another qualified surgeon that the operation was medically necessary. The application has not yet been approved, despite advocacy efforts by Mayor Robert Quaiff, MPP Todd Smith and MP Mike Bossio. The family has even received telephone calls from the Prime Minister’s Office.

At this point, Andrea is on total parenteral nutrition (TPN), where liquid nutrients are taken through an IV in her upper arm. This regimen of treatment was started in August when Andrea was admitted to hospital suffering from malnutrition. She hasn’t eaten since then, and is limited to drinking no more than half a cup of water per day. While TPN is preserving Andrea’s life, there are risks associated with the treatment. They include the possibility of infection in the IV line, blood clots, bone disease and liver failure. The delay in getting the operation also increases the possibility of irreversible tissue damage. A major fear for Andrea is that a twist could develop in her intestine and require immediate emergency surgery, resulting in the removal of part of her bowels.

Frustrated by the delay in the OHIP approval, Keith has started a crowdfunding appeal to help meet the cost of providing the life-saving surgery for Andrea. The goal is to raise $250,000 to cover the cost of the surgery and pay for post-operative treatment. Andrea will have to stay in the Cleveland area for up to eight weeks after the operation. She cannot obtain thirdparty health insurance coverage, so there could be additional health-related costs. Keith and Valerie are both retired and they have arranged a line of credit against their house, which they will use to get the necessary treatment for their daughter. So far, the response to the crowdfunding appeal has been outstanding, with over $56,000 raised in 13 days.

The ordeal has been stressful for the whole family. “I can’t even begin to talk about the stress level,” says Keith. “It’s scary enough when you have to have major surgery, and this is life-saving surgery, but then to have all this other stuff going on. I wake up every morning hoping this was all a bad nightmare.” His wife Valerie echoes the sentiment and sees a silver lining. “It’s really hard, it’s really difficult, but we can’t slow down and we have to keep moving, keep lobbying to help our daughter. This is the most challenging thing we’ve ever had to go through. But during this crisis we have met the most incredibly kind wonderful people. Everybody is just coming around and rallying and helping us.”

This is taking an enormous toll on Andrea, too. “The last few weeks have been really difficult. I’m struggling with iron deficiency and general health issues. I’ve been pulling really long days trying to get somewhere with this OHIP application. I can’t even begin to describe the exhaustion. It’s like your veins are being pumped full of cement. I’m starving, I miss food. Being hungry 24/7 is not the most fun thing. I’m a special education teacher and it was heartbreaking to leave my position out west. There’s nothing more than I want to be able to work again and to be able to ride and run and eat.”

Yet there is optimism in Andrea. Despite the tiredness, the nausea, the pain—typical pain medications will adversely affect her intestine—and the constant hunger, she maintains a positive outlook. She is grateful for the support from her parents, who are her principal caregivers, and remains confident that together they will get the operation that she needs. She also has praise for the rest of her healthcare team. “We are so incredibly lucky to have the hospital that we have here, and the nurses and the local doctors. When you are going through something like this, it really makes a difference to have people like that in your corner.”

Visit gofundme.com/malrotationsurgeryfund for more details on how to contribute to Andrea’s fund.