Toddler living with Down Syndrome

Sunday, October 3, 2010
Shailyn Sandage celebrated her second birthday Saturday. Diagnosed with Down Syndrome at birth, Shailyn is a happy, healthy toddler, providing her family with much more than just the challenges of the disorder. (Noreen Hyslop ~ Daily Statesman)

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

By NOREEN HYSLOP

Dexter Daily Statesman

When Kelsey Sandage was expecting her first child four years ago, she was told by her doctor that the baby would be born with Down syndrome. An amniocentesis performed when she was about seven months pregnant revealed that likelihood.

"I didn't know anything about Downs. I was 18 years old and scared. I researched it somewhat, but I really didn't know everything Down syndrome involved," she said.

When the baby was born two months later, the family realized all their worries had been unfounded. Koghan, now 4, was born without a sign of Downs. The doctor had been mistaken by a false positive test.

A year later, Kelsey gave birth to a girl she named Ryleigh. Perfectly healthy, Ryleigh is now 3.

One year after Ryleigh's birth, Kelsey had her third child.

"After what happened the first time, we told the doctor we didn't want any testing done this time to determine if there was a problem," Kelsey said. "It just caused so much concern and there had been nothing to worry about."

When Shailyn Blake Sandage was born on Sept. 4, 2008, Kelsey and Jordan Sandage were stunned. Their baby girl had Down syndrome.

"We suspected it as soon as she was born and we saw her, and it only took about an hour for the doctor to come in and tell us," Kelsey said.

Initially, the news was difficult for the parents to comprehend and to accept.

"I remember that Jordan and I said to each other, 'What are we going to do? Our lives have been forever changed,'" Kelsey said.

Today Jordan and Kelsey Sandage from, Bloomfield. Mo., agree that their lives changed when their daughter, Shailyn, came along -- but for the better.

Named after John Langdon Down, the first physician to identify the syndrome, Down syndrome is said to be the most frequent genetic cause of mild to moderate intellectual and developmental disabilities and associated medical problems. It occurs in one of about every 800 births in all races and economic groups and is described as a chromosomal disorder.

According to some experts in the field, the incidence of Down syndrome rises with the increasing age of the mother. Many specialists recommend that women who become pregnant at age 35 or older undergo prenatal testing for the syndrome. While some reports state the chances are one in 1,000 of a woman under 30 carrying a Down syndrome baby, others would argue that those numbers are greater.

"We've been told that 85 percent of Down syndrome children are born to parents under the age of 35," said Jordan Sandage.

The life expectancy of a child with Down syndrome has also changed over the years involves. While years ago a Down syndrome child was not expected to live past their teens, today it is not unusual for individuals to live well into their 60s or 70s.

Down Syndrome children often have some hearing loss due to the abnormal development of the bones in the middle and inner ear, but Shailyn does not appear to have any significant hearing loss. A test in the near future will determine if that is entirely true.

Approximately half of the number of Downs children have congenital heart disease, and Shailyn fits into this pattern.

"Shailyn was born with a hole in the middle of the four ventricles of the heart," her mother said. "That hole closed up on its own, which is often the case, but another one now has developed and so doctors are watching that."

So far, the active little blonde-headed Shailyn has avoided surgeries. Further tests, including an echo cardiogram scheduled to take place this fall, will determine if that pattern will hold true.

Shailyn Sandage has brought nothing but energy and joy to the young family that now numbers five. As typical siblings, her older brother and sister are her protectors and her best friends. And as typical siblings, they don't always get along.

"We don't treat Shailyn any differently than we do the other children," Jordan said. "She is taught to behave just like they are. We show no difference between the three of them."

That method of upbringing has paid off for the Sandage family. Several factors in raising a Down syndrome child play into the family structure.

"She can be very stubborn," Kelsey said. "When she doesn't want to do something, she sometimes just crosses her arms and pouts and grunts, but we let her know that she has to follow rules just like everyone else."

Part of what may appear to be stubbornness comes from the frustration of Shailyn's delayed speech development. Many of Shailyn's achievements are months ahead of typical Downs children. Typically, her expressive language is delayed by several months when compared to other 2-year-olds.

Though comprehension comes easily, speech does not.

"It's a frustrating thing to know what you're trying to communicate and not be able to come across with the words," Kelsey said.

To lessen the frustration, Shailyn is learning to sign. Belinda Worley, a speech therapist, works with Shailyn regularly and teaches her simple signs for various nouns, phrases and commands. She began therapy with Worley in March and currently has about a 20-word vocabulary using signs. She is proficient at signs to indicate words like please, thank you, dog, cat, drink, more, hello and bye.

Shailyn can speak, though.

"Get it" comes out loud and clear, as does "stop" and others that are put to use daily at play.

Walking, for a Down syndrome child, does not come easy. At 22 pounds, Shailyn is extremely healthy, but very small for her age. As is typical of a Downs child because of the lack of muscle tone, she learned to crawl using hands and feet, with her bottom raised high in the air. It comes easy, but therapists and her family encourage her to use her legs to walk, which is coming more natural with each passing day.

Milestones for Shailyn are celebrated in a big way in the Sandage home. From learning to sip from a straw to learning to adjust to ankle braces to help with her stability, the sound of clapping and hoorays is commonplace within the household.

Along with her speech therapy, Shailyn sees an occupational therapist and a physical therapist.

"Early intervention is key," her mother said. "And we've had the most wonderful people working with Shailyn. She gets great support, and she keeps gaining ground."

For the Sandage family, life has indeed changed over the past two years. And as Shailyn Blake turned 2 in September, a proud and loving family helped her blow out the candles on the cake.

Kelsey Sandage sums up the family's sentiments as she says, "If God didn't want us to have Shailyn, if he didn't think we could do this, he wouldn't have blessed us with her."

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