Last year’s summer blockbuster “Wonder Woman” helped introduce a new generation of little girls, like Delaware 5-year-old Kiera Cheatham, to a courageous and inspiring superheroine. While she may be too young to realize it, Kiera doesn’t have to imagine she is strong and brave like Wonder Woman, because in the eyes of those who know her, she already is a superheroine.
Decked out in Wonder Woman attire and surrounded by family and friends wearing T-shirts sporting the iconic Wonder Woman logo and a quote from the movie — “Change their minds and change the world” — Kiera will be treated to an experience befitting a superheroine as a Patient Champion during the Nationwide Children’s Hospital Columbus Marathon & ½ Marathon on Sunday, Oct. 21.
Kiera’s journey to becoming a Patient Champion began before she arrived into the world just over five years ago.
Joe Cheatham, Kiera’s father, said 20 weeks into his wife’s (Ashley) pregnancy, doctors discovered a black dot during an ultrasound, which immediately “threw up some red flags.”
At that moment, the Cheathams had no idea of the battle ahead for their baby girl, but their little superheroine was up to the challenge.
Following her birth in 2013, Kiera was diagnosed with OEIS (omphalocele, exstrophy bladder/cloaca, imperforate anus and spinal defects) complex.
For those wondering what OEIS complex is, Cheatham doesn’t recommend searching for it online.
“Googling it is the worst thing to do, because the images that come up are horrible,” he said. “It’s basically the rarest form of multiple birth defects. One in every 400,000 kids have it.”
Instead of doing an Internet search, Cheatham said he is an “open book” and more than willing to share his family’s story.
“I’d rather people ask me questions than give me that, ‘I’m so sorry for you’ stare when you walk by me in the mall,” he said. “I’d rather people come up and ask me about her.”
To put Kiera’s condition in layman’s terms, Cheatham said each letter in the OEIS complex syndrome stands for something.
The “O” stands for omphalocele. “It’s basically like an extra pocket of skin on the outside of your stomach, and some of your organs are on the outside of where they are supposed to be,” he said. “Her intestines and her bladder were on the outside when she was born.”
He added the “E” stands for exstrophy, in which Kiera’s bladder was on the outside of her body. The “I” stands for imperforate anus. “It basically means she doesn’t have one,” Cheatham said. “The ‘S’ is for spina bifida.”
As if having a daughter born with a rare condition wasn’t tough enough, the Cheathams were dealt another heartbreak upon Kiera’s birth.
“The first thing we noticed when she came out was one leg was shaped like an ‘S,’ and the other one was not even a leg,” Cheatham said. “That was the biggest surprise and scariest moment for my wife and I.”
With what he remembers being 20 or so people in the delivery room waiting for Kiera’s arrival, Cheatham said his baby girl was immediately placed in “a glass box and taken to Children’s.”
It would be a few days later before Kiera was placed in the arms of her parents.
“When she was three days old, they did her first surgery where they put her bladder and intestines back in, and they did her colostomy,” Cheatham said. “We didn’t get to hold her until after that surgery.”
By the time Kiera was 6 months old, she had developed what her dad calls “a gigantic cyst” at the base of her spine due to the spina bifida. In order to stop the growth, doctors removed the cyst and as a result, also took the “bottom quarter of her spine, and all the nerves that were there are gone,” Cheatham said.
This surgery, however, left the Cheathams facing the reality their little girl would never walk, so before she turned a year old, they made the decision to have “what was there as legs amputated off (just above the knees),” Cheatham said. “With her back surgery, doctors said she would never be weight-bearing. If she wasn’t going to be able to walk, there was no point putting her through more and more surgeries to correct the legs that were there, while also having to break her hips down the road to bring her legs together.”
He added before making the decision to amputate Kiera’s legs, they consulted numerous doctors to make sure they were making the right choice.
“The biggest thing they told us was just let her be a kid. We were like, okay, we will let her be a kid,” Cheatham said. “She learned to crawl like this, so that’s what she knows.”
Having mastered the art of navigating through the world without legs, Kiera’s strength and perseverance was again put to the test, just like her favorite superheroine — Wonder Woman.
Roughly a year ago, she endured a 14-hour surgery to build a urine reservoir inside her body.
“Up until last year, she had to wear diapers,” Cheatham said. “The goal the whole time was before school age, doctors wanted to get her out of diapers. What they did is they took part of her intestines and they used some of it to build the reservoir for pee (drained through a catheter every four hours or so). They also used part of her intestines to build everything on the outside. All her girl parts are there on the inside, but there was no opening on the outside prior to the surgery.”
A fighting spirit
After surviving roughly 15 surgeries through the first few years of her young life, Kiera is now a 5-year-old preschool student at Olentangy Local Schools, and she has reached a point where is finally getting to enjoy her life outside the hospital.
“All the major stuff is pretty much done,” her father said. “There might be maintenance surgeries every now and again as she grows, but for the most part, the major surgeries are done.”
Despite the constant trips to the hospital and having to watch their daughter go through everything she has at such a young age, Cheatham said he and his wife, who also have a younger son, consider themselves blessed to have such a courageous and tough daughter who has endured in five years what many people go a lifetime without having to overcome.
“We never wish that things were different. We are happy with how things are,” he said. “We just want her to grow up being her. I could say my biggest wish would be for her to walk, but it’s not. I just want her to be happy with who she is and never feel ashamed of being in a wheelchair.
“She is perfectly fine with how she is now, and we are perfectly fine,” Cheatham added. “That’s all we can ask for.”
Having spent much of her young life in and out of hospitals, one would think visiting a hospital would be the last thing on Kiera’s mind. To the contrary, she looks forward to her visits, mainly for the lasting relationships she has developed.
“She is one of the few kids, I think, who actually enjoys going to the hospital,” Cheatham said. “That makes it so much easier for us knowing it’s not going to be a complete train wreck on the morning we have to go to the hospital.
“In fact, we have to go early because there are some many people she wants to go visit or see before and after her appointment,” he added.
The feeling is mutual
From the looks of it, the doctors and nurses at Nationwide Children’s Hospital enjoy seeing Kiera’s smiling face as much as she enjoys seeing those who have taken care of her over the years.
As for her upcoming role as a Patient Champion during the hospital’s annual marathon on Oct. 21, Cheatham said he and his wife were approached by doctors who asked if they would be interested in submitting an application to have Kiera nominated to serve as a Patient Champion.
“Every year, the hospital and board picks 24 kids to represent the hospital in the marathon, and Kiera was lucky enough to be selected after receiving five nominations overall to be a Patient Champion.”
Asked what it meant to him to have his daughter selected as a Patient Champion, Cheatham said it shows his daughter has left a lasting impression on those she has come into contact with at the hospital.
“I think they see the amount of things she has gone through and how happy she still is,” Cheatham said. “They all know how much she has been through, and she sticks it out. That’s why I think they nominated her to be a champion.”
He also said he would be remiss if he didn’t mention the lasting effect the doctors and nurses have had on his daughter.
“She also wouldn’t be the kid she is without all of them,” he said. “I know the race is about the kids, but I feel like the doctors and nurses deserve credit, too, for making the kids who they are.”
The 39th annual Nationwide Children’s Hospital Columbus Marathon & ½ Marathon will take place at 7:30 a.m. on Sunday, Oct. 21, at North Bank Park.
Cheatham said Kiera will serve as the Patient Champion for mile 25, and her cheer section will be located at the entrance to Goodale Park, 120 W. Goodale St., Columbus.
Kiera’s job as a Patient Champion is simple.
“They just cheer,” Cheatham said. “They make it all about the kids. All the runners want to see the kids. Her entire mile, I guess, is going to have gigantic 8-foot pictures of her and info about things she likes and things she does.”
The theme Kiera selected for her mile won’t come as a shock to those who know her.
“She chose Wonder Woman,” Cheatham said.
Those who want to join Kiera and her family can stop by her cheer section between 9 a.m. and 2 p.m. on Oct. 21.
Based on the amount of Wonder Woman T-shirts the family has sold, Cheatham expects Kiera’s section to be well-represented.
“It turned out a lot bigger than I thought it would be,” he said. “We sold over 100 T-shirts, and we will have extra ones available the day of the race with all the money going to the hospital.”
Those who want to donate directly to Nationwide Children’s Hospital in honor of Kiera can do so by visiting her Patient Champion page at give.nationwidechildrens.org.
Cheatham added he understands many people don’t have the extra money to donate, and he was one of those people who never really thought hard about donating to causes like the hospital.
“You never know when something is going to happen and completely flip your world upside down, which is what happened to me and my wife,” Cheatham said. “We are just grateful for the people who do donate.”
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