At age 9, Taylor Fitch shouldn’t have to be thinking about going through a major surgery and possible amputation.
That, however, is her reality if she wants to accomplish a longtime goal of being able to stand up and walk.
She was born with arthrogryposis multiplex congenita, or AMC, which is the medical term describing the presence of multiple congenital contractures, according to amcsupport.org.
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A contracture is the limitation of movement of a specific joint, or a joint that does not have a full range of movement. The contractures in most forms of arthrogryposis are usually nonprogressive and involve more than one area of the body. The word congenital means the contractures are present at birth, so they have occurred or been produced during embryonic development.
On Sept. 30 in Greenville, South Carolina, she will undergo a 10-hour-plus surgery on her hips and leg that will give her the opportunity to stand.
Some kids would be scared about surgery. Not Taylor.
“I’m ready,” she confidently said four times.
She had that response because she and her parents, Robert and Rachel Fitch of Crothersville, once were told she wouldn’t ever be able to walk because of her rare disability, which affects one in 3,000 live births.
“Basically, everything that is supposed to bend or move can’t. It is fixed in one position,” Rachel said of AMC. “She doesn’t have full range of motion to move her head all the way from one side to the other. She’s not able to raise her arms. She doesn’t have any control to bend her elbow. She cannot make a fist.”
Taylor has found a way to write and draw by putting a pencil between two fingers and using her entire body to do the task at hand.
“The problem with AMC is it’s not like a one size fits all, so the treatment for one kid is going to be a 180 for the next kid,” Rachel said. “It is so vastly different between each child.”
Seeking a solution
Taylor went to a doctor in Lexington, Kentucky, multiple times but didn’t make progress.
Finally, Rachel asked what could be done to fix Taylor’s legs. Taylor gets around by scooting on her butt, but that’s causing damage to her bent left knee and ankle because those body parts aren’t meant to fully support a person’s weight.
“(The doctor) turned around and he looked at her and he said, ‘You will never walk. You will never get out of your wheelchair. You need to just give up and accept you will always be wheelchair-bound,’” Rachel said. “He said there was no hope for her and we need to just give up, we had unrealistic goals. It made me mad.”
Rachel found an online support group for moms of children with AMC and read stories about their kids having surgeries to fix their legs. She also learned about a medical conference that teaches families and doctors about the rare disability.
Eagle Chiropractic in Austin, which had been a big part of Taylor’s progression, helped raise money for the family to attend the conference in the summer of 2019 in Norfolk, Virginia. Rachel and Robert and their five children and his mother, Teresa, all went.
Consultations with two AMC leg specialists resulted in shocking news.
“The very first words out of both of those doctors’ mouth — we met them on separate days at separate times — were ‘How come she’s not walking yet?’” Rachel said.
Taylor was 8 at the time, and the doctors said most of the surgeries are needed between 18 months and 4 years of age.
“We all just broke down and cried,” Rachel said.
‘We have hope’
The family was given the option of two doctors, but the one in Florida didn’t accept private insurance and the cost for the surgery would be $100,000, and the other one in Pennsylvania had a two-year wait list.
Then they learned about Shriners Hospitals for Children—Greenville and had their first appointment there Nov. 4, 2019, with Dr. David Westberry. They received a copy of Taylor’s X-rays for the first time, and Westberry recommended amputation of the bent leg but wanted to get a second opinion.
Dr. Lauren Hyer was on maternity leave at the time, so the family returned to South Carolina in January 2020. Her options were amputation of Taylor’s bent leg or surgery to cut both hips and rotate them in and cut tendons and muscles on her bent leg, get it to hang behind her and have prosthesis from the knee down.
The family had what they call “a hard conversation,” and Taylor chose the surgery.
“If she decides she doesn’t like it this way, they will take her back in and amputate. If there are any complications during surgery, she will come out of surgery an amputee,” Rachel said. “I’m thankful she had a say-so because it’s her body and she wants to try to save her leg, so we’re going in with a plan of saving the leg, getting it to hang behind her.”
The doctors will do the surgery together.
“I have to hang onto the fact that it’s God’s timing,” Rachel said. “Now, she’s way past the threshold of being able to have those surgeries that would have literally changed how she is now, so we don’t have many options left because her body has grown this way for so long. You focus on the future, and for the first time, we have hope.”
During the most recent visit to the hospital, Taylor learned how to put on and take off her socks, pants and shirt and strap her leg braces.
“They taught her more in three days than she has accomplished in her entire life,” Rachel said. “They are working toward complete independence with her, whereas just two years ago, she was always going to be dependent on us for the rest of her entire life.”
Fundraiser to help with expenses
Initially, Rachel thought she would be the only one traveling with Taylor to South Carolina for the surgery and staying there for eight weeks for intense physical therapy.
Just recently, though, she found out the Ronald McDonald House, where they planned to stay, is closed because of the COVID-19 pandemic.
Their patient advocate, however, was able to convince the Shrine Temple in Indianapolis to prepay for hotel stays each week.
Now, the plan is to leave each Thursday and drive the eight hours to South Carolina, have a hospital visit on Friday and Monday and come back home for eight weeks. The week of Nov. 16, they will stay the full week and do intense therapy.
“For nine years of her life, she has always been on the ground … so we are literally going to have to retrain her brain for everyday functions,” Rachel said.
They will have to cover their gas and food expenses, so a fundraiser is set for 8 a.m. to 3 p.m. Saturday at their home, 4833 S. U.S. 31, Crothersville. That will include a bake sale, a lemonade stand and a silent auction.
Donations also can be made online at gofundme.com/f/giving-taylor-the-opportunity-to-stand.
“As a parent, it’s very hard that you aren’t able to meet all of your daughter’s medical needs without help,” Rachel said. “It makes you feel bad that you depend on strangers to help raise your child almost, but at the same time, I’m so thankful for the help.”
She said she had to put her pride aside and allow people to help Taylor, whom she has raised for six years and adopted a couple of years ago.
“I didn’t give birth to her, but I’d give her my arms and legs in a heartbeat. To me, that’s my kid just as much as my biological children are,” Rachel said. “I’m literally at the point of if I don’t raise the money, she will never walk. I’m just trying to do what I can to make sure she has the surgery. I’m giving up two months of my life to literally change the rest of her life.”
While Taylor will eventually be able to stand and walk, her ability to write will be taken away. That’s tough because she likes to write stories and draw.
“To be in that position as a parent, to weigh walking to writing, it’s not fair. You want your child to do both,” Rachel said.
“We had one of the hard conversations and it was ‘Would you rather write or would you rather walk?’ and she said, ‘I’m just tired of being left behind. I want to go out in the yard when it’s muddy. I want to be able to go places,’” she said. “We made the decision we’re going full steam ahead with walking, and if we lose writing, we’ll find a way.”
Taylor says her superpower is determination, so she will do whatever it takes to live as independently as possible.
“Up until last year, I never thought independence was possible for Taylor. I thought I would always be her arms and legs,” Rachel said. “Now, we are in a position where we are going toward independence, and it’s nice to have hope again. It gets to a point you question things, ‘What’s her quality of life?’ Now, for the first time, we’re actually getting to improve her quality of life, and that’s nice.”
If this surgery is a success, Rachel said there’s a possibility of a future procedure to give Taylor one working arm. The family also hopes for a medical advancement to build Taylor a working knee where her bent leg can be fixed, and she’s looking at a total knee replacement on her right leg around age 13.
“It’s a very hard emotional roller coaster. AMC is not easy. It’s beautiful, but it’s not easy,” Rachel said. “It makes you appreciate the abnormalities in each person. It makes you really step back and realize what’s important.”
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What: Fundraiser for Taylor Fitch, a 9-year-old Crothersville girl who was born with arthrogryposis multiplex congenita and will have surgery later this month
When: 8 a.m. to 3 p.m. Saturday
Where: 4833 S. U.S. 31, Crothersville
Details: Bake sale, lemonade stand and silent auction; auction items will be posted on Rachel Fitch’s Facebook page, facebook.com/rjballar, and on display at the event
Help out: To donate a silent auction item or money, call Rachel Fitch at 812-820-5785
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Donations may be made to the Fitch family online at gofundme.com/f/giving-taylor-the-opportunity-to-stand.
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