Bloomfield girl thrives despite triple diagnoses

Editor's note: This is the seventh in a series of articles from the Dexter Daily Statesman focusing on special needs of special children.

By NOREEN HYSLOP

Dexter Daily Statesman

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

It was Oct. 24, 1993, and Keith and Tabatha Lang were expecting a perfectly healthy baby girl. 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.

In a matter of 24 hours, doctors in St. Louis gave Katelyn's family 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. A low hairline is also typical of the disorder.

Her second diagnosis was Duane Syndrome. It is more common in girls than boys and referred to as a "miswiring of the eye muscles." It causes some eye muscles to contract when they shouldn't and limited ability to move the eye left or right. 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.

Katelyn's parents were also told their daughter had Mobius Syndrome. She was affected just weeks into gestation. Mobius Syndrome is said to strike in 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," said Katelyn's mother, Tabatha who is now remarried with the name Gamache.

None of the three syndromes are related to one another. Katelyn's mother said doctors think Katelyn got tangled and untangled in the umbilical cord multiple times while in the womb.

"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," she said.

Physicians suspected Katelyn was blind because she displayed no emotion at all. Doctors refer to it as a "masklike" face, and it is indicative of the Mobius Syndrome.

After two weeks in St. Louis, armed with three diagnoses and little direction, the Langs 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."

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.

"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," her mother said.

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 other 16 year-olds enjoy. She has a driver's permit, despite her limited mobility.

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