Nebraska teen travels to CAMC Cleft Center for surgery to correct birth defect - Archived
While most teenagers spent last summer swimming, hanging out with friends or just being lazy, 14-year-old Madison "Maddie" Troshynski traveled 800 miles from her Nebraska home to West Virginia for anything but a vacation.
In June, Maddie and her parents came to the CAMC Physicians Group Cleft Center/FACES for a series of surgeries to repair a birth defect that affected her facial development.
"Madison was born with bilateral cleft lip and palate, which means there was a large separation in her upper lip and in the roof of her mouth," said Bruce Horswell, MD, DDS, MS, FACS - Medical Director of the Cleft Center/FACES. "It also left her with severe midfacial hypoplasia, which is flatness and undergrowth of the whole upper face - eye sockets, nasal area, cheek bones and upper jaw. In fact, part of her upper jaw was completely missing. When that is lost things don't grow well in the mid face."
Maddie had been under the care of a cleft team in Lincoln near her hometown of Wilber, Neb., since she was a child. However, three years ago her dentist attended a conference in Washington, DC, where Dr. Horswell presented a lecture about the procedures and technology available at the Cleft Center at CAMC. They were convinced that Maddie would be a good candidate for some of those procedures, including one called midface distraction, which is a technique where the upper jaw, cheeks, nose and eye sockets are moved forward to correct their underdevelopment.
"We've been doing this procedure for almost 15 years and 10 or 11 years here at CAMC," Dr. Horswell said. "It isn't just done in Charleston, but it wasn't available to them in Nebraska."
The distraction procedure involves surgically implanting small mechanical devices into the upper jaw and facial skeleton that slowly pull the mid face forward using a screwdriver-type instrument which is turned on a daily basis.
"It's like having braces tightened with a little more discomfort," Dr. Horswell said.
In Maddie's case, the process took three weeks and brought her upper jaw and mid face forward about a centimeter and a half. Then Dr. Horswell surgically removed the distraction device and put permanent plates and screws in their place to hold things in position.
"The advantage of doing this process slowly rather than trying to move everything at once is that you are able to gradually stretch the tissues," Dr. Horswell said. "Children with cleft lip and palate have a lot of scar tissue on their palate that holds things back. You can't mobilize it easily when you have a long distance to cover, so distraction works better than conventional surgery. As you bring (distract) bones forward new bone is formed and deposited behind the upper jaw and facial bones, thus actually stretching or growing a larger facial skeleton."
Cleft lip and palate are birth defects that happen while a baby is developing in the uterus. Early in pregnancy, the bones and tissues of a baby's upper jaw, nose and mouth normally come together to form the roof of the mouth and the upper lip. Clefting results when there is not enough tissue in the mouth or lip area, and the tissue that is available does not join together properly.
Cleft lip and palate are some of the most common birth defects in the United States, affecting one of every 600 newborns. However, the Troshynski's knew little about it or what the future would hold for their daughter.
"When I was pregnant we didn't know there was a problem," said Diane Troshynski, Maddie's mom. "In the ultrasounds Maddie had her hands by her mouth so we couldn't tell that anything was wrong. When she was born, our midwife did a good job explaining everything to us so we wouldn't be so shocked. She was a beautiful baby - perfectly healthy in every other way."
The Troshynski's journey of understanding their daughter's condition began right after she was born.
"It opened a whole new field for us," said Maddie's dad, Ted. "I heard of people being born with cleft lip, but it wasn't something I ever had to deal with. We needed to find out more."
"You just feel so bad as a parent," Diane said. "You see your child and think what did I possibly do wrong to make this child this way? You go over everything, and then you find out that it just happens, and we don't know why it happens. But there's nothing wrong with these children. It's not their fault, and it's not your fault. It's just something that God has given you to learn to cope with, and there are doctors that can help."
The Troshynski's were reassured by doctors and nurses as they learned about their options.
"They talked to us about it and brought us books with pictures of babies that had been born with cleft and what they looked like years afterwards," Diane said. "That was really helpful for us to understand that they can do something for children born this way."
The Troshynski's had to do some things differently with Maddie as a baby than they had done with their two older children, such as how they fed her. Without a roof in her mouth Maddie couldn't suck, so her parents would squeeze milk into her mouth. She also couldn't have a pacifier. But other than some lifestyle adaptations, the Troshynski's decided early on that they would treat their daughter no differently from her siblings.
"The plastic surgeons explained to us that the most important thing is to show Madison that there's nothing wrong with her. She's just someone with this little 'owie' on her lip, and she grew up knowing that," Diane said.
Repairing cleft lip and palate happens in stages, as it affects many aspects of a child's life, including facial appearance, speech, hearing, eating, swallowing and dental health. When Maddie was 3 months old, she had her first surgery in Nebraska to begin the process.
"At first we thought maybe we shouldn't do this because we love her just the way she is," Diane said. "But we decided to go ahead, and the results were amazing. They closed the part of her lip that was wide open."
"At that point we knew everything could be fixed," Ted said.
Then when Maddie was 1-year old, she had a second surgery to repair the roof of her mouth. However, additional surgeries to her jaws, teeth and face would need to follow.
"The doctors in Nebraska didn't want to work on Madison anymore until she was an adult - when everything stopped growing," Diane said. So for the next 11 years Maddie did not have any additional surgeries.
Then her dentist met Dr. Horswell and told the Troshynski's about the procedures available to children and teenagers at the Cleft Center at CAMC.
"Why ask a child to go through their developmental years with an underdeveloped jaw or face?" Dr. Horswell said. "It's hard enough being a teenager." So Maddie's parents did their homework.
"We wanted to find the best doctor," Diane said. "We're not rich by any means...we get by. But when it comes to your child you have to be picky. We always felt like the good Lord was pushing us in the right direction."
The Troshyski's contacted Dr. Horswell and had their first appointment with him in May 2009.
"We made the decision then that this is a pretty neat doctor, and we'd like something like this for Madison," Diane said.
Maddie returned a few months later for surgery to establish her gum line and to place a bone-like substance in her upper jaw, which prepared her for the most recent distractor procedure.
"Dr. Horswell is a doctor that loves children," Diane said. "There are new advances for children with cleft, and he knows them. We want the world to know about Dr. Horswell so other children can have the same quality of life as Madison."
The Troshynski's know that not everyone can travel long distances for medical care, which is why they are encouraged by training that's taking place at the Cleft Center that will benefit children far beyond West Virginia.
"Dr. Horswell trains other doctors, and those doctors go and do what Dr. Horswell is doing somewhere else," Ted said. "So there are little sprouts being put up all over the country. Eventually there will be a doctor in Nebraska that does the same thing as here, it's just a matter of time. Until then, we will come to West Virginia."
Maddie returned home in July to enjoy the last weeks of summer before starting her freshman year of high school. What's next for her is orthodontic work and potentially more surgery on her nose and jaw. Dr. Horswell and his team consult with Maddie's cleft team in Nebraska, and they will determine if she needs to come back to the Cleft Center for subsequent procedures after her orthodontic work is done.
"I think she will be pleased when everything is finished and she'll be happy with the way she looks," Diane said.
For now, Diane says there's nothing stopping her daughter. She's an outgoing teenager who is active in her school and community and has high aspirations for her future.
"I've always wanted to be a doctor, but I always change my mind on what kind of doctor - maybe a neonatologist," Maddie said.
Maddie has a confidence about her that is not typical for a teenager, particularly one who has had to overcome physical limitations all of her life. But her dad says it just comes natural.
"Maddie has what I call an old soul," Ted said. "I think she's been around once before, so she just knows what's going on. She has a depth to her that some kids develop later in life, but Maddie just seems to have been born with it."
As a result, Maddie may have looked different from other kids growing up, but she says she never felt different.
"I don't care what people think. I am who I am," she said with a smile.