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National Birth Defects Month raises awareness

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Jaden Klan, 18, takes a walk with his family in his neighborhood. Klan was diagnosed with spina bifida before he was born but continues to live a full life with the love and support from his family.

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Jaden Klan, 18, has spina bifida but keeps active by playing wheelchair basketball, participating in 5K races and playing his bass guitar.

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Jaden Klan enjoys some snacks with his family after school.

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Hunter Williamson of East Finley Township works with physical therapist Amanda Owens during a session.

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Jessica Williamson and her 4-year-old son Hunter Williamson share a laugh during a therapy session at the Children’s Therapy Center in McMurray. Hunter has hydrocephalus, partial trisomy 18 and kidney issues.

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Hunter Williamson laughs while playing during a physical therapy session with his physical therapist, Amanda Owens. Doctors told Hunter’s mother when he was born that he wouldn’t live past a year.

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Jessica Williamson holds her son Hunter as he finishes up a therapy session.

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Hunter Williamson works on his motor skills with physical therapist Amanda Owens during a recent session.

January is National Birth Defects Prevention Month.

The condition is more common than you might think. One in 33 babies in the United States is born with a birth defect.

There are thousands of birth defects, some mild, others severe.

Among the most common are heart defects and Down syndrome.

Jaden Klan, 18, of North Strabane Township, was born with spina bifida, a common birth defect that affects one out of every 1,000 births.

Other birth defects, such as partial trisomy 18 and monosomy 21, which 4 1/2-year-old Hunter Williamson of East Finley Township was born with, are rare – in fact, doctors at Children’s Hospital have told Hunter’s mother that he is the only child they are aware of who has both defects.

The causes of most birth defects aren’t known, and not all birth defects can be prevented, said Michele Frennier, state director of communications for the Pennsylvania Chapter of the March of Dimes. Some are caused by the genes a baby inherits from parents, while others are caused by environmental conditions.

All birth defects have one thing in common: Having a child with a birth defect impacts the whole family, which faces unique challenges to help their loved one live as normal and healthy a life as possible.

When Nicole Klan of North Strabane Township went with her husband, Rob, for her 18-week ultrasound for her triplets, the expectant parents were told that the ultrasound showed one of the babies had an abnormal spine.

An amniocentesis test confirmed that Jaden had spina bifida.

Spina bifida results from the failure of the spine to close properly during the first month of pregnancy.

“What I learned was that the spinal cord doesn’t form properly, and that happens at about four weeks into the pregnancy, when you don’t even know you’re pregnant,” said Klan. “Taking folic acid can help prevent that from happening, but the doctors were thinking that because they were triplets, there just wasn’t enough folic acid.”

Surgery to close a newborn’s back is generally performed within 24 hours after birth and the condition can also cause bowel and bladder complications.

A large percentage of children born with spina bifida, including Jaden, also have hydrocephalus, the accumulation of fluid on the brain.

After Jaden’s diagnosis, the Klans were referred to Dr. Ian Pollock, a neurosurgeon at Children’s Hospital in Pittsburgh.

“He told us what we could expect as far as deficits Jaden would have, what kind of life we could expect for someone with his diagnosis, and he basically was right, that Jaden would use a wheelchair, have issues with bowel and bladder, and from a mental standpoint he’d function just like his peers.”

Jaden, his brother Jonathan and sister Trisha were born in August 1997.

Soon after, the surgery to close Jaden’s back was performed.

A surgical procedure called shunting was peformed to relieve the hydrocephalus.

Although spina bifida impacts his life every day (Jaden has undergone surgery twice to replace the shunt after it stopped working, he is battling kidney problems and he visits Children’s Hospital every six months, where specialists address his health issues), Jaden, a senior at Canon-McMillan High School, has developed into a happy, active young man who enjoys school and typical teen activities.

He plays in a wheelchair basketball league, competes in 5K races and plays the bass guitar.

One of the good things about Canon-McMillan is that everybody is welcoming. I do realize that I’m not the same as everybody else, but I feel included,” Jaden said.

Jaden also participates in Disability Mentoring Day held annually to bring greater awareness and national attention to employment opportunities for people with disabilities. He visited Bayer and Noble Energy, where he learned about careers those companies offered and experienced the workplace environment.

He has shared his mentoring experiences with the Canon-McMillan School Board, Allegheny County executives, and members of Pittsburgh Mayor Bill Peduto’s staff.

Jaden plans to attend college and is considering Edinboro University of Pennsylvania and the University of Pittsburgh at Greensburg.

Jaden said occasionally he gets frustrated and dispirited because of his disability, but it doesn’t last long,

“I do sometimes wonder, ‘Why me?’ but that isn’t productive and it doesn’t solve anything,” said Jaden. “It’s good that I come from a religious family because I often pray and it helps me focus on the blessings in my life.”

Nicole Klan said she has told her children from the time they were small that “different doesn’t mean bad, it just means different.

“I’m really glad we had triplets because I didn’t have the opportunity to coddle Jaden,” said Klan. “He had to fight for his place and for attention, like the other two, and I’m actually thankful for that. I want the same for him as I want for my other kids: I want him to have a job he loves, and to be surrounded by people who love and appreciate him, and people he loves and appreciates.”

Jessica Williamson’s doctors told her that her son, Hunter, probably would die within days or weeks of his birth. At most, they said, he could survive one year.

Hunter was diagnosed with partial trisomy 18 and partial monosomy 21. Trisomy is a condition in which an extra copy of a chromosome is present in the cell nuclei, causing developmental abnormalities. Partial monosomy occurs when only a portion of the chromosome has one copy, while the rest has two copies.

Both birth defects are rare, but doctors don’t know of any other child who has both, Williamson said.

“Doctors told us that if he did live past that, he’d never walk or never talk,” she said.

Hunter, 4, has defied the odds.

At a recent physical therapy session at Washington Health System’s Children’s Therapy Center in McMurray, Hunter chased after kickballs and soccer balls and climbed through a padded tube, laughing and periodically looking over at his mother to make sure she was watching him.

Said physical therapist Amanda Owens, “I’ve never seen anyone with his diagnosis. When I got his chart, I had no idea what I was getting into or what to expect. But he has made progress so quickly. I build off of what he’s achieving, and he keeps exceeding expectations. He’s so motivated and happy and his parents are amazing, which has a lot to do with his success.”

Hunter has several medical complications caused by his birth defect: among them, the ventricles of his heart are underdeveloped, he had craniostenosis (caused when the sutures of the skull close to early) and an underdeveloped cerebellum, and his aorta was blocking 90 percent of his airway. He also had a feeding tube inserted at about 6 weeks old.

In what Williamson called “the best day ever,” Hunter had the tube removed in December and now can eat thin liquids.

Williamson, 33, quit her job as a receptionist at Image Radiology Group in Canonsburg to care full time for Hunter.

She spends much of her time attending to Hunter’s needs. He participates in physical therapy classes several times a week, attends preschool at the Intermediate Unit 1 school in Laboratory, and sees several medical specialists (at last count, Williamson said, he had been to 15 specialists) to address his health issues.

Her husband, Jeff, a coal miner who works for Consol, helps as much as he can.

The Williamsons also get plenty of help caring for Hunter from Jessica’s parents, Randy and Eileen Kelley, sister and brother-in-law Holly and Todd DeBlasio, and her best friend, Shanna Spec.

“They are my biggest support. Without them, I wouldn’t be able to do this. I could not do this on my own,” said Williamson, whose 5-month-old son recently was diagnosed with a birth defect that affects his legs.

While Hunter’s vocabulary is limited, he comprehends everything that people tell him, and he gives a huge grin and “thumbs up” sign to acknowledge when he’s happy.

So far, Hunter has had more than 14 surgeries, and he will have another to add a muscle to his thumbs so that he can grip objects.

He often ends up in the emergency room of Children’s Hospital – Williams estimates they end up there every week or two – most recently because of complications from nasal reflux.

But Williamson is thankful to have her son.

“It’s exhausting, and there are days I’m worn out. But I’ll do whatever I have to for my kid,” said Williamson.

No one knows what to expect for Hunter’s future. He’s in unknown territory now, his mother acknowledged.

He’s a unique and special kid. He’s come so far,” said Williamson, who mentioned that on May 27, 2001, while still a high school student on her way to a cemetery where her grandfather was buried, she was in a single-vehicle accident on Interstate 279 in Pittsburgh and the sport-utility vehicle she was driving flipped six times. She was not wearing a seat belt, but amazingly was not hurt in the accident.

“I told myself there was a reason that I walked away from that accident, that there must be some plan for me. Ten years to the day, on May 27, Hunter was born,” said Williamson. “I think I know why I’m here now. I don’t stress about things. I have faith in Hunter. Miracles happen every day, and there are medical advances all the time. Life’s too short to worry about those things. I just enjoy every day I have with him.”

For information on birth defects and how to prevent them, visit the March of Dimes website at marchofdimes.org or the National Birth Defects Prevention Network website, www.nbdpn.org.

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