“There’s something we need to tell you.”
When Laura Lee Rose heard these words shortly after giving birth to her first child, she didn’t know what to expect. By her own admission, she was “out of it” after the birth, but she clearly remembers that before she saw her daughter for the first time, the nurses wanted to prepare her for something. Kaylee had been born with a cleft lip and cleft palate.
Fortunately for Kaylee’s parents, one of the nurses had a daughter with the same condition. She quickly showed Laura Lee pictures of her five-year-old’s winning smile, which allayed some of Laura Lee’s fears. So she knew it was a correctable birth defect, but she was also well aware that it would be a long road ahead for Kaylee.
So what is a cleft lip and palate? According to the Mayo Clinic’s website, “A cleft palate is an opening or split in the roof of the mouth that occurs when the tissue doesn’t fuse together during development in the womb. A cleft palate often includes a split (cleft) in the upper lip (cleft lip) but can occur without affecting the lip.”
In Kaylee’s words, “There’s basically a hole from the back of my throat up through my nose. It wasn’t closed, so there was just a big opening.”
The birth defect is caused by a combination of genetic and environmental factors that cannot be predicted or prevented, based on current research. Currently, most parents are aware of this condition before their child is born. However, when Kaylee was born in the 1980s, ultrasounds weren’t as sophisticated or as widespread as they are today, so her parents and doctor weren’t aware she had a cleft lip and palate until she was born.
Years of Surgeries
Kaylee was born in Columbia, Missouri, but her doctor recommended the family travel to St. Louis Children’s Hospital for her surgeries and treatment. Though the family later moved to Illinois, Kaylee returned to Children’s in St. Louis for all of her care regarding the cleft lip and palate.
Due to the opening in the mouth and nose, babies with cleft lip and palate are often unable to suck. Kaylee had to be fed using a bottle with a special nipple on it that worked as a funnel. She had to sit up to eat, and the milk was essentially poured down her throat.
Kaylee was just six weeks old when she had her first surgery, which closed the cleft lip so she could better eat. Six months later she had another surgery to work on her lip.
She was also fitted with a removable plastic plate that fit into the roof of her mouth to seal off the palate. As you can see in the photo, she had to wear arm splints after her early surgeries to ensure she didn’t touch the site.
When Kaylee was just over a year old, she had yet another surgery. This one closed her palate so she could eat and drink more normally. She was also fitted with ear tubes at an early age, as kids with cleft palate and lip are more prone to ear infections.
The first surgery Kaylee can remember took place when she was five years old. This procedure was a nose revision, where they took cartilage from her ear and put it in her nose to make it a typical nose shape. Afterward, her head and nose were both wrapped for a time.
“I remember that [surgery] pretty well because it was pretty traumatic for me,” Kaylee says. “I didn’t like medicine. I didn’t like hospitals. I remember going into surgery and being held down. My parents were trying to give me a sedative and I kept spitting it out into their face.”
Around this time, Kaylee was also fitted with a retainer, as her teeth were out of place due to the cleft. She was also missing a tooth near the front of her mouth, so a fake tooth was attached to the retainer to fit into the hole. At other times, she had a tooth attached to braces (which she had twice), and a tooth on a clip.
Each year Kaylee would also attend a team evaluation. It would last all day, and she would see a steady stream of doctors throughout the day, such as the orthodontist, periodontist, and speech therapist.
At the age of twelve, she had a bone graft to completely close the cleft in her palate. Bone was taken from her hip and placed in the roof of her mouth. “That one was difficult,” Kaylee says, “because it was a lot of mouth work. I had a lot of stitches in my mouth for a few weeks and couldn’t drink out of a straw.”
When Kaylee was fifteen, she had another surgery. This time it was a lip revision to try to even out her lips. They took skin from the inside of her bottom lip and put it on her top lip.
During her college years, she had crowns and veneers put on her front teeth so she could have a permanent fake tooth. She has needed some crown revisions over the past few years. Before her wedding last spring, she had new front teeth put in.
And just recently, she discovered that the bone from the graft she had at age 12 has deteriorated and she again has a large cleft in the roof of her mouth. She consulted with doctors at Children’s Mercy Hospital in Kansas City to come up with a treatment plan.
As a result, last week she had a root canal, and next year they’ll check the bone graft again to see how quickly it is deteriorating. Kaylee is now 30, and another bone graft might not be an option at her age. “It’s possible,” she says. “It’s just harder. And the likelihood of it succeeding is lower.”
So Kaylee’s journey with cleft lip and palate is not over by any means. But taking care of the physical birth defect is only part of the equation.
More Than a Physical Issue
Kaylee endured a lot of teasing when she was younger. As you can imagine, some kids were really mean. And they would ask questions: “Why is your face like that?” “What’s wrong with your nose?” “What’s wrong with your lip?” She now understands that kids are just curious, but it was still hard for her to be different from everyone else.
On the plus side, Kaylee grew up in a small town where everyone pretty much knew everyone else. So after the initial curiosity died down in the early years of elementary school, it wasn’t a huge issue. “My class didn’t change from kindergarten to high school that much,” she says. “A few people came in and were like, ‘What’s wrong with your face?'” But then they would get used to it.
Her early years were not only full of doctor and dentist visits, but also speech therapy, of which Kaylee was not a fan. “It was embarrassing to be pulled out of class and have to go somewhere else. I absolutely hated it.” She had to read simple words over and over again, and she felt like it wasn’t helping her.
Though she disliked the process, her speech did improve, though it’s not perfect. “I still do have a bit of a speech impediment. But it doesn’t bother me that much. I talk eight hours a day at work. I’m constantly on the phone with someone. It hasn’t really impeded me for being an impediment.”
She admits she’s not the best speaker, though. There are some words and sounds she still has trouble with. “S’s sound kind of weird sometimes,” she says, but her husband has been helpful with that and her overall speech. “Andrew has worked with me a lot with his theater background. It’s been a long road of going to speech therapy and flashcards and hating it to having to give presentations on a regular basis to a few hundred people.”
Kaylee works as a regulatory consultant at Cerner in Kansas City. Her job takes her all over the United States, where she advises hospitals and clinics on federal regulations. Once a month, she’ll travel to a client site and present to groups of around 30 people, though it can be higher. She’ll teach for an eight-hour day and then go back for another half day the next day.
“I still get a little nervous,” she says. But she thinks about it this way: “They just want to know what I’m talking about. They’re there for a reason. So I’m going to tell them what they need. It’s still a little nerve-wracking, but the more I do it the more I get used to it.”
Helping Others Progress
One of the benefits of working at Cerner is that they require workers to take a four-week sabbatical after seven years on the job. For a fourth of that time off, employees are required to do volunteer work.
They gave Kaylee a list of places that are always looking for volunteers, and Northland Therapeutic Riding Center was an option. One of her best friends from childhood had raised horses and had been involved with therapeutic riding centers in the past, so Kaylee decided to follow in her steps.
She volunteered at NTRC full-time for one week. She took care of the horses, mucked stalls, fed the animals, and did other jobs as they popped up. She loved it so much that she decided to stay on as a volunteer. From March through November she spends an evening each week at the center.
NTRC caters to kids with all kinds of special needs: kids with autism, muscular dystrophy, brain tumors, and even speech problems. The children ride the horses and are able to form a bond with a horse. Even if the kids are non-verbal, they can still communicate with the horse through arm and leg movements.
Kaylee’s job is to lead the horse while the kids ride and do the activities planned by the teachers at the center. She works with two different kids on a one-on-one basis. The little boy she assists is unable to walk without arm crutches, but “he’s amazing on horseback.” And the little girl she works with had a brain tumor when she was younger and subsequently has some balance issues. Kaylee says, “It’s great to see her progress from not being able to balance on a horse to being able to do it herself.”
She enjoys being able to help kids who are different, just like she was as a child. “It’s a really nice way to see kids who might not fit in at school that are just enjoying themselves and not caring about anyone or anything else but just being on their horse. … It’s really great.”
Kaylee also volunteers with Kappa Delta, which was her college sorority at Bradley University in Peoria, Illinois. For the past five years she has been the chapter advisor at Stephens College in Columbia, Missouri. She finds it very rewarding to see college girls progress from their early college years through graduation and beginning their first full-time job.
Both of Kaylee’s parents grew up in farm families, and they passed along their love for sheep to their daughter. On many weekends, you can find Kaylee at her grandparents’ farm in rural Missouri, and she spends several weeks each summer showing sheep at fairs around the Midwest with her extended family. She also thoroughly enjoys teaching her two nephews and other young cousins the intricacies of caring for and showing livestock.
Kaylee Paredes is an excellent example of someone who not only who lives well and serves others but also influences others—especially young people—to do the same.
Q&A with Kaylee Paredes
About Cleft Lip and Palate
What advice do you have for families and kids with cleft lip and palate?
• Understand that Everyone Is Different in Their Own Way
Realize that everyone has things that make them different. God created you this way for a reason. Sometimes it’s really hard to remember that when people are making fun of you, but you’re OK. I think it’s sometimes hard to remember that you’re OK. The teasing is not really hurting you. It hurts your feelings sometimes, and that’s not great. But everyone is different in some way, and this is just the way that you are different. Some kids wear glasses, some wear braces, some wear crutches. And that’s OK. Parents and adults, reaffirm that with the kids in your life.
• Be Prepared with Ways to Pass the Time During Breaks in Long Doctor’s Visits
On the days when you have team evaluations, it really helps to pass the time if you have gifts and activities to do in between sessions. That’s what my mom did for me. After each doctor, I got to open a present and do something. I would get a coloring book or an activity book or stickers. When my mom went with me to Children’s Mercy a few weeks ago, she did not bring me any presents. I was like, “Mom, where’s my present? I just saw a doctor, and now I need a present.” She was nice enough to go with me, but zero presents.
• Take the Sedative, but Skip the Flavors
If you are going into surgery, take the sedative. It helps. But don’t do bubble gum or cherry. I still can’t handle those flavors of anything. It flashes me back.
• Take a Comforting Toy into Surgery
It helped to have my teddy bear, Mr. Ted. I got him when I was born, and he went with me to every surgery—even when I was 15. He was a constant I could take with me into the OR. He would be there when I woke up, and it was a really nice comfort for me. They even gave him a surgical cap and booties, because he was going into surgery too.
What advice do you have for people who encounter someone with cleft lip and palate?
• Be kind.
• Feel free to ask questions.
I don’t mind questions. If you’re curious, ask. It’s not taboo. I’d rather have someone ask than whisper about me somewhere close by. Just ask me.
Where can people find more information or resources about cleft lip and palate?
• Children’s Hospitals have resources online. Check any pediatric hospital’s website.
Are there any books for or about children with cleft lip and palate?
This book is for brothers and sisters of children with cleft lip and palate. It can also be helpful for the affected child, as well, when he or she gets older
This book helps kids understand the condition in a child-friendly way. It describes why clefts happen and how they affect people’s daily lives.
What non-profit organizations focused on cleft lip and palate do you recommend?
Their website explains: “Millions of children in developing countries with untreated clefts live in isolation, but more importantly, have difficulty eating, breathing, hearing, and speaking. Cleft repair surgery is simple, and the transformation is immediate. Our sustainable model provides training, funding, and resources to empower local doctors in 85+ developing countries to provide 100%-free cleft repair surgery and comprehensive cleft care in their own communities.”
Their website explains: “Operation Smile is an international medical charity that has provided hundreds of thousands of free surgeries for children and young adults in developing countries who are born with cleft lip, cleft palate or other dental and facial conditions. … Operation Smile helps to fill the gap in providing access to safe, well-timed surgeries by partnering with hospitals, governments and ministries of health, training local medical personnel, and donating much-needed supplies and equipment to surgical sites around the world.”
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