While devastated by the diagnosis, Routt County families love and celebrate their children with Down syndrome
March 17, 2013
Kevin Kleckler remembers well the doctor's telephone call about his newborn son.
The news being delivered on the other end of the line was not easy to hear because it confirmed his suspicions.
Lewis has Down syndrome.
"You hold it together on the telephone when you hear the news, just like anyone who gets told that they have cancer or they have something that's terminal," Kleckler said recently, recalling that August 2009 day. "You hold it together while you're on the phone, and then quite honestly, you just fall apart afterward."
Kevin and his wife, Carrie, were devastated.
But their feelings gradually turned to joy as they began to experience the unique opportunity of raising a child with Down syndrome.
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"I think it totally changes your outlook on life when you have a child with a disability because it changes your values," Carrie said. "The things you thought were really important before are not so much."
Today, an increasing number of parents-to-be are faced with a tough, soul-searching decision. Prenatal screening for Down syndrome has evolved beyond ultrasounds, and it isn't without controversy. Some estimates suggest that after expectant parents learn their unborn child might have Down syndrome, 50 to 96 percent of those pregnancies are terminated.
For the Klecklers, knowing that Lewis had a higher risk of Down syndrome wasn't an issue.
"I don't believe that having that extra chromosome is grounds for terminating a pregnancy," said Carrie, who along with Kevin is anti-abortion. "It makes me sad not only for the child that is never born, but for the families that are missing out on that experience."
That experience helped lead Steamboat Springs residents Kristin and Elijah Stevenson to continue with their second pregnancy even after learning their unborn son might have Down syndrome.
"Every family we talked to felt like they were blessed to have a child with Down syndrome," Kristin Stevenson said. "You really don't understand it until you have a kid with Down syndrome, too."
Living the dream
The Klecklers are living what many would describe as the American dream. They have three children and a dog named Daisy. They take family trips every summer and think it's important for their children to see more than their hometown of Hayden. Most recently, they went to San Diego and visited SeaWorld and Legoland.
There might not be a white picket fence enclosing the backyard of their half-acre lot on the southern edge of Hayden, but Kevin has put his skills to use in other ways around the home. From the deck railings to a wooden and wrought-iron fence around the yard to a steel sculpture inspired by Carrie carrying their first child, Kevin continues to add personal touches to the home they built themselves.
Kevin, a skilled tradesman who runs the Babson-Carpenter Career and Technical Education Center in Hayden, also built the home next door, where his parents live.
The family is active in the Mission of Grace Baptist Church, where Carrie teaches Sunday school and runs the nursery while Kevin serves as a church elder.
"Our faith is central to who we are," Carrie said. "We made it our goal this year to read the New Testament together. We're into the Book of Mark now."
Carrie used to be a special-education teacher at Hayden Valley Elementary School. During the school year, Kevin works 60-plus-hour weeks, which allows Carrie to stay home with the kids.
For Kevin, the weekends are for relaxing, recharging for the coming week and spending time with family. On a recent Saturday, Kevin made grilled-cheese sandwiches while Lewis shouted out the names of animals in a book with his sister, Jenna, 6, and brother, Andrew, 9.
Early into the pregnancies, all three Kleckler children were tested and found to be at a higher risk for Down syndrome. But all of Lewis' ultrasounds were normal, offering no indication that anything was wrong.
"It didn't matter for us," Kevin said. "God blessed us with a child and whatever."
Carrie chose not to travel to Denver for an amniocentesis, a procedure in which a needle collects fluid from the amniotic sac. Tests then can determine whether the child has Down syndrome, but the procedure comes with the risk of a miscarriage.
Today, a less invasive procedure is available to screen for the chromosomal condition. A pregnant mother's blood can be drawn and certain levels of protein and hormones can signal Down syndrome.
The existence of the test raises concerns for some.
"There is this concern that the new test will lead to higher rates of termination," said Mac Macsovits, executive director of the Rocky Mountain Down Syndrome Association.
By the numbers
Down syndrome is the most common chromosomal abnormality and is caused by an extra copy of Chromosome 21. The condition results in delayed development and below-normal IQs. Other medical problems often accompany Down syndrome. For example, 40 to 60 percent of infants with Down syndrome have a heart defect, according to the Down Syndrome Association.
People with Down syndrome have a distinct look often characterized by small ears, a round face, a small mouth with a large tongue and almond-shaped eyes. They have trouble developing muscle tone, and they are at greater risk for leukemia, sleep apnea, celiac disease and diabetes.
Since being discovered by Dr. John Langdon Down in 1862, the choices parents face have evolved tremendously. In the beginning of the 20th century, close to 100,000 children with Down syndrome were institutionalized. Macsovits said some parents were told their children had died at birth when in fact they were taken to institutions.
"The popular philosophy was there were special places for these special people … and these places were deplorable," Macsovits said.
The conditions in which children with Down syndrome lived led to a life expectancy of just nine years. As recently as 1983, the average lifespan of a person with Down syndrome was 25 years.
Today, more than 400,000 people in the United States have Down syndrome, and the life expectancy is about 60. One out of 691 babies has the condition.
Getting the news
Lewis' arrival into the world was quick and dramatic.
That day, the Kleckler family had been moving Andrew into his newly finished basement bedroom to make room for Lewis. Kevin was supposed to officiate a wedding that day but had to pass off the script to someone else at the last minute.
Carrie arrived at Yampa Valley Medical Center at about 3 p.m., and Lewis wanted out. He was born at 6:18 p.m. There was no time for an epidural, and hospital staffers gathered to witness the rare delivery. He came out face up and chin first, which doctors said was the most difficult way to deliver a baby.
"It was quite exciting, actually," Carrie said.
Dr. Ron Famiglietti first mentioned his suspicion the day after Lewis was born. Lewis had low muscle tone, a hallmark of Down syndrome.
"They call them floppy because they don't hold themselves stiff like a normal baby," Carrie said. "That was the first thing someone noticed that wasn't quite right with him."
Chromosomal testing was recommended, and Lewis' blood was drawn the following morning.
"That was when the reality of the situation hit us, and we had a pretty somber trip home with Lewis that afternoon," Carrie said.
Kevin received the test results five days after Lewis was born.
"It was definitely a shock," Carrie said. "It's not easy news to hear. Obviously, no one wants to hear something is wrong with their child, especially something that is going to be disabling their whole life."
Kevin's immediate concern was for Lewis' long-term health.
"What's his life expectancy?" Kevin asked himself. "Who's going to take care of him after we're gone?"
Carrie had a different initial reaction.
"My concern was more whether people would accept him and love him for just the way he was," she said.
It took her about a week to absorb the news. She couldn't help but feel like Lewis had been cheated out of his potential because of an extra chromosome.
"You're grieving the loss of a child that you thought you were going to have," Carrie said. "You're grieving that you don't have this perfect child that you had imagined."
But the support came quickly, beginning with Carrie's parents.
"They reassured me right away that of course they were going to love him," Carrie said. "They already did."
The family went to church the next week and shared the news with the congregation.
"Everybody just rallied around us," Carrie said. "It's not only amazing how people have accepted him, but they love him. They adore him."
The Klecklers then reached out to the Down Syndrome Association, and Carrie received counseling from a Denver parent who also had a child with Down syndrome.
Lewis, now 3 1/2, has been an otherwise healthy boy. He has a small hole in his heart that is monitored by a cardiologist who comes to Steamboat monthly, but Carrie said surgery likely won't be necessary.
"We're really fortunate that he's very healthy," Carrie said.
Celebrating the little things
It's difficult and stressful for many parents to keep up with a child going through the terrible twos.
For Lewis, who didn't start walking until he was 2, the terrible twos only now are under way.
"He's pushing buttons on the TV, on the printer, flipping light switches and taking his shoes and socks off all the time," Carrie said. "That's all good. That's all normal development. It's just delayed, and every stage kind of lasts longer with him."
Every one of Lewis' accomplishments has been a big deal, and they're celebrated by the whole family. The occasions range from his first tooth to the first time he could be given a sandwich and not end up throwing it.
"Now, when he puts two words together, we get really excited," said Carrie. Moments later, Lewis asked for "music, please."
Lewis can vocalize many of his favorite things, like his favorite book "Brown Bear, Brown Bear, What Do You See?" He recently recited the entire book while riding in the car.
Lewis also likes visiting Grandpa next door. When Lewis wants to go, he says "Pappy house."
Lewis' speech development has been helped by working with speech therapists. Starting the day he was born, resources were made available to help Lewis through the Individuals with Disabilities Education Act. Until Lewis turned 3, the Klecklers took advantage of the $436 million federal program administered by states that aims to make sure children are ready for preschool and kindergarten. When Lewis was just 3 months old, for example, an occupational therapist with Horizons Specialized Services started coming to the Kleckler home once per week to work with him.
In September, Lewis started attending preschool for free. He goes two mornings each week and spends much of his time in a normal classroom, but he also gets specialized attention from occupational and speech therapists working for the Northwest Colorado Board of Cooperative Educational Services.
"He's progressed quicker than I anticipated," said Tami Hotchkiss, Lewis' teacher.
In addition to the therapy services, Hotchkiss said Lewis benefits from the social environment of being around other children, and Lewis is learning from his peers.
"They're really enjoying having him in the classroom," Hotchkiss said. "They really enjoy spending time with him and making sure he's a part of the classroom."
Carrie thinks Lewis' speech will continue to improve, and he will be placed in a normal elementary school classroom, potentially with a paraprofessional to offer some individual help.
"Our goal is for him to be as independent and fully functional as possible," Carrie said.
Long term, the Klecklers wonder what Lewis' life will be like.
"We're hoping that he'll be able to work, have a job, have relationships and be as independent as he possibly can," Carrie said "It's just things we can't know until we get there."
A unique opportunity
When it came time to explain Lewis' condition to their other children, the Klecklers kept it simple and said it was going to be harder for Lewis to learn things.
Andrew has been busy being the big brother.
"It's just different," Andrew said. "It's more fun. I don't really know how to explain it."
Andrew likes to read to Lewis and teach him new things. And there's plenty of horseplay. Lewis is in the midst of a phase where he likes to throw things at his older brother.
"He does not like the word 'no,'" Andrew said.
The Klecklers said their experience of having a child with Down syndrome has been overwhelmingly positive, and it has made them a better family. Carrie points to studies that have shown that siblings of children with disabilities are more compassionate.
"I think it's already the case," Carrie said while looking at Andrew.
For the Klecklers, intelligence and achievement have different meanings now.
"It's more important that they are kind to people," she said. "That they can be compassionate."
She thinks parents who choose to terminate Down syndrome pregnancies are missing out.
"It's sad to me that people make that choice."
Kevin said having Lewis has exposed them to a different community of people, including other area families who have children with Down syndrome.
"Our lives are so much richer," Kevin said.
Looking to the future
Efforts are under way by scientists to treat people with Down syndrome in order to increase their cognitive abilities. In November, scientists at the University of Washington announced they had removed the extra copy of Chromosome 21 in cell cultures derived from a person with Down syndrome. The discovery could lead to treatments for many of the medical conditions people with Down syndrome face. Cutting-edge research also is taking place at the Linda Crnic Institute at the University of Colorado's Anschutz Medical Campus in Denver.
While the Klecklers are open to the potential medical benefits, they cannot imagine Lewis any other way.
"He wouldn't be who he is without Down syndrome," Carrie said. "That's who he is."
To reach Matt Stensland, call 970-871-4247 or email mstensland@SteamboatToday.com