Missouri teen isn't deterred by early health obstacles

Friday, October 8, 2010 | 6:00 a.m. CDT; updated 11:56 p.m. CDT, Monday, October 11, 2010
This undated photo shows Katelyn Nicole Lang in Bloomfield. Lang has battled three rare syndromes that doctors thought would leave her blind and require that she use a wheelchair.

DEXTER — At 10 hours old, tiny Katelyn Nicole Lang from Bloomfield was on her way by ambulance from Poplar Bluff to Children's Hospital in St. Louis. She was hooked to tubes and wires and monitors that nearly covered her frail five pounds.

It was Oct. 24, 1993, and Keith and Tabatha Lang were expecting a perfectly healthy baby girl. There had been no indication along the course of the nine-month pregnancy that anything was wrong. But when Katelyn was born following a 32-hour labor, doctors quickly whisked her away to be examined. The baby had been born blue from lack of oxygen. Little Katelyn had several issues with which to deal, including continual seizures, so it didn't take long for doctors to make plans for the transfer to St. Louis.

In just a matter of 24 hours, Katelyn's family was given her diagnoses. There were three of them, all unfamiliar to her parents.

The first was Klippel-Feil syndrome, caused by a failure in the normal segmentation of the cervical vertebrae during the first few weeks of a pregnancy. Any of the cervical vertebrae can be involved. The result is a remarkably and visually short neck, granting the victim restricted mobility of the upper spine. Oddly, a low hairline is also typical of the disorder.

A second diagnosis called Duane syndrome was also dealt to Katelyn. Duane syndrome is more common in girls than boys and referred to medically as a "miswiring of the eye muscles." It causes some eye muscles to contract when they shouldn't and limited, sometimes even absent, ability to move the eye outward toward the ear or inward toward the nose. In about 80 percent of cases of Duane syndrome, only one eye is affected, most often the left.

Duane syndrome patients can also have abnormalities of the upper limbs and heart, abnormalities of the optic disc and fusion of neck vertebrae.

Finally, Katelyn's parents were told their daughter had Möbius syndrome. Like the other disorders, she was affected just weeks into gestation. The rare disorder is said to strike in only one of every 50,000 births. Typical patients develop speech problems, and the disorder is also characterized by a fixed gaze in infants.

"The doctors first told us she may be blind," Katelyn's mother, Tabatha (now remarried with the name Gamache) explains.

Oddly, none of the three syndromes are related to one another. Katelyn's mother explains what doctors have surmised happened before her birth. "Katelyn would apparently get tangled in the umbilical cord," she says, "cutting off circulation to different areas of the body for a time. Then she would maneuver and untangle herself, only to do it again through the early months of pregnancy. The doctors say that when the fetus became untangled, development would pick up from where it left off and miss those stages that should have taken place while it was deprived."

One of the symptoms that led physicians to suspect that Katelyn was blind was the fact that she displayed no emotion at all. Doctors refer to it as a "mask-like" face, and it is indicative of the Möbius syndrome.

After two weeks in St. Louis, armed with three diagnoses and little direction, they packed up their baby girl and headed home to Bloomfield.

"We were told that Katelyn would probably never walk or talk and that they just couldn't tell us how long she would live."

With heavy hearts, but heaping optimism, the family settled into a life that brought considerable change. Katelyn was their only child, and her conditions demanded a lot of attention. Doctors visits were frequent, and surgeries soon came to be routine.

"Katelyn has undergone countless surgeries at this point," says her mother. "She has had brain surgeries including a craniotomy, several eye surgeries to keep the eye from turning in, and a surgery to fuse her spine.

Katelyn has Type III of the Klippel-Feil syndrome, defined by having multiple contiguous, congenitally fused cervical segments. More simply stated, she has undergone surgeries to have metal rods inserted to fuse her vertebrae together.

Yet she manages to keep up with a full school schedule and activities that all 16-year-olds enjoy. Her list of accomplishments now includes earning a driver's permit, in spite of her limited mobility resulting from the Klippel-Feil.

"I can't turn my head like most kids," she explains. "When I turn, by whole upper body turns, so we're working on how that's going to work if I can get my driver's license."

Raising Katelyn has not been without other unique challenges.

"Because Katelyn cannot look up or down or to the side, she never crawled. She was unable to look ahead of her while on all fours, and so she could only see the floor in front of her."

While at home, she is familiar with steps and surfaces, but the school environment can be challenging.

"She is allowed to leave her classes a few minutes before everyone else to allow her to maneuver the halls and steps," her mother explains. "Sometimes in a group, she'll place a hand on the shoulder of someone in front of her so that she can tell when there is a step coming. It's not that her vision is that bad; she just cannot see what is below."

Soon, Katelyn Lang will celebrate her 17th birthday. She is a happy, relatively healthy sophomore at Bloomfield High School, attending regular classes and earning consistent A and B grades.

"I really enjoy history," Katelyn says. "Math is my least favorite subject, but I do OK in it."

With aspirations to someday be a physician, Katelyn has set her sights high. And why not? In her young life, she has surpassed all expectations, even those of her physicians at Children's Hospital where she has returned regularly over the years. For the optimistic almost 17-year-old, the sky, it seems, is the limit.

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