Last year, Brooke Andersen secured a slot with one of a handful of surgeons in the world who could do an operation to improve her quality of life. The only problem? The surgeon was located in Spain during the height of the COVID-19 outbreak.
The Provo woman’s surgery was postponed indefinitely as the mortality rate in Spain rose and Spanish cemeteries ran out of room for all the bodies.
It all started in 2019 with vision and hearing problems. Then Andersen started unexpectedly losing consciousness. Months later, she developed severe migraines, memory loss and brain fog. Her doctors ordered an MRI, but during the exam she suddenly became paralyzed from the chest down. Her ability to speak came and went.
After a nightmarish medical journey of being shifted from specialist to specialist with incorrect diagnosis after incorrect diagnosis, Andersen took it upon herself to find out what was wrong. She watched a series of medical lectures, documented all of her symptoms and compiled tons of research. Finally, she learned about Ehler's-Danlos syndrome, and everything started to make sense.
Andersen’s disorder is an inherited condition that affects skin, joints and blood vessels, which led her to develop structural instability of her head, neck, spinal cord, as well as repeated episodes and symptoms of anaphylaxis in April 2020. Before her surgery, she wore a rigid neck brace to help hold up her head and she couldn't walk without crutches. Even then, she spent most of her days in bed suffering debilitating pain and unable to lift her head for more than a few hours.
Without the surgery to fuse her skull to her neck, she would have continued to deteriorate quickly, most likely ending up bedridden and in a halo brace. The options for surgery, however, were severely limited and not covered by insurance.
Her family sold their home and moved into a one-bedroom apartment with her four little boys in order to pay for the surgery.
After Andersen’s story was published, donations and encouragement poured in, mostly from complete strangers, through a GoFundMe account and Venmo. By the time the surgery came around, the donations reached around $13,000.
"I don't know that we have the words to describe what those donations meant," Andersen said. "Even selling our house wasn't quite enough to do what we needed to do. We couldn't have done it and been able to get into another house. There were so many times we looked at (the donation list) and cried."
With this financial support, she settled in to wait indefinitely until COVID-19 restrictions loosened in Spain. While she waited and the world shut down, she felt like everyone else was suddenly living her reality — never leaving the house, being isolated and constantly having to take health into consideration.
After two months, she was finally able to squeeze her surgery into a minuscule window on June 4, 2020, after Spain opened travel from the United States and just before the United States closed off travel from Spain.
"Because of the severity of my case, as soon as the countries opened up, they got me over there," Andersen said.
She and her husband arrived in Spain with a thick stack of medical forms explaining her need for medical attention, which helped when they met with over two dozen police who only let her in once they understood the severity of her condition.
She rented an apartment with her husband, Trevor, near Barcelona and quarantined while taking taxis to and from the hospital for surgery preparation and COVID-19 testing appointments.
During the operation, the surgeon fused the top of her neck to her skull using metal rods and bones from cadavers. Andersen stayed in the intensive care unit for two days postoperative and eight days in the hospital, total.
"We really had an amazing surgery. I don't know if we could have asked for the surgery to go better than it did," she said.
Immediately afterward she was able to walk without crutches.
Her husband stayed with her the first three weeks of recovery in their rented apartment. Then he flew back to take care of their sons, and a friend flew in to help her through the next three weeks of recovery.
Then it was time to fly home. Because travel was limited during the pandemic, commercial airlines did not schedule many direct flights, which meant that it took three separate flights for her to get home. The travel time with all the flights meant that she was sitting for 22 hours straight, more than 11 times longer than she had been able to manage at that point.
The travel wreaked havoc on her recovering body, forcing her to stay in bed for a week while throwing up and being hooked up to IVs.
"It was honestly a disaster. It was the first setback in my healing process," Andersen said.
She resumed physical therapy with a therapist specifically trained to work with people with the syndrome, and soon was able to take walks with children and even start driving for the first time in over a year.
Her family moved into their new house, specifically designed with accommodations for Andersen, like an accessible first floor, an accessible shower, 42-inch-high countertops, the oven and microwave combo built into the wall so she doesn't have to bend over,
"Moving in gave me a new sense of freedom," she said. "It made me feel like I had a little more normalcy back in life."
However, not all of these improvements would last. Her headaches and neck pain returned and she was put back into her neck brace.
Since March she has spent a couple days in bed a month and has migraines about half the time. These changes weren't unexpected. The fusion was to improve the quality of life, not to provide a miraculous solution, but she was hoping the positive effects would last longer.
"(Recovery) was great at the beginning, until recently when she started falling apart again," Trevor Andersen said. "I just keep thinking, 'Oh, I remember this.' All these things came flooding back. We were just hoping for a few more years of a normal life."
Her latest CT scan showed that one of the cadaver bones hasn't taken, though it hasn't been accepted or rejected. X-rays show that her instability has spread even further down her spine.
Brooke Andersen's hope was to make it another five or so years without needing another fusion, but now she's hoping to make it until next summer.
Her kids have also expressed some disappointment that she still isn't as active as she used to be, even after the surgery. She can't play on playgrounds with them or go to museums like she used to. She has a customized tricycle so she can bike with them, but the rides can only last around 30 minutes.
Yet even with the decline, she in no way regrets the surgery and uses the coping mechanisms she has developed in years of counseling to process the trauma in a healthy way and remain positive most of the time by remembering what she can do.
"Recovery is a roller coaster. With EDS and the fusion, we know it's just a matter of time before more surgeries are needed," she said. "I try to just focus on everything I've gained from surgery: the ability to be more present with my children, drive them to most of their swim lessons. I only missed one baseball game this season. I'm still able to walk without crutches and articulate what I want to when I want to."
Her next goal is to get a car that allows her to drive easily, even though she can't turn her head. Cars with accommodations like these are expensive, but it will allow her a lot more freedom to drive longer distances.
Insurance has been a major stumbling block during her recovery because the company and agents don't understand her rare condition or the treatment she needs. The bills just keep coming. Trevor Andersen is a real estate agent. The current state of the housing market in Utah has meant that he is doing a lot of work to not get paid when his clients are priced out of the market after writing a dozen offers. Finances have been tight, to say the least.
The decline in COVID-19 cases and opening of businesses and public spaces brings mixed emotions for Andersen. Her children can go back to school, which brings some relief, but the medical hoops she had to jump through increased because of the pandemic. Now the rest of the world gets to move on from the limitations that she still has to deal with.
"If I think about living a life like this forever, it's overwhelming and a bit depressing, so I just take it a day at a time," she said. "You've just got to have hope and faith, and you've just got to be grateful for the good time you have before it gets worse."
For her next fusion — all the way down to her upper back — she will be going back to the same surgeon in Barcelona. Even though she paid $80,000 for the surgery, she doesn't feel like that's even enough for the kind of medical treatment she received from the surgeon and the hospital staff there.
"I just feel so blessed to get over there and have that surgeon to begin with," Andersen said. "I try not to get too emotional because emotions hurt my head, but I can rarely talk about it without getting emotional. I mean, how could you not?"