Wednesday, September 21, 2011

Moms say their children with Down syndrome are ‘gifts’


On her blog, Christine Sheffield references a poem called “Welcome to Holland,” a place she’s never lived.

The poem was written by a mother about having a child with Down syndrome, an experience Sheffield can relate to since the birth of her son Braden. The poem likens having a baby with a disability to making big plans to visit Italy and ending up in Holland. You buy guidebooks, learn Italian phrases — it’s your dream destination.

So how did I get to Holland?

It’s a question asked by many parents once they find out their baby has Down syndrome. But, it turns out, Holland is a beautiful and majestic place, Sheffield writes. And she wants others who will never go there to know that, too.

“I want to show people that a Down syndrome diagnosis is not the end of the world,” Sheffield, 41, said. “It’s not something to be feared. The more we show we’re a normal family living a normal life, the more acceptance we’ll have in society.”

The Antelope resident has a blog about the joys of raising her 10-month-old son Braden. He has brought lots of surprises, including a trip to New York City Thursday. Sheffield, Braden and her 19-year-old daughter Ashley are attending the annual Buddy Walk event that kicks off October as Down Syndrome Awareness Month.

The family was invited to attend after a photo of Braden was chosen as part of a video that airs in Times Square during the walk.

Both raised in Roseville, Christine and her husband Danny Sheffield graduated from Oakmont High School and have been married 21 years. They already had five children — one died as a baby from sudden infant death syndrome — and Braden was a surprise.

Before learning she was pregnant, Sheffield read a magazine article about a local family adopting a Ukrainian baby with Down syndrome. She and her husband considered adopting a baby with a disability. Then she had her own.

“It’s not much different than being a mom of a baby without Down syndrome, or as we say, a ‘typical’ baby,” Sheffield said.

About 50 percent have a heart defect and Braden has a small hole that doctors expect will close. Some people with Down syndrome will develop vision and hearing loss, and thyroid problems.

Down syndrome is one of the most common genetic birth defects and affects about 3,400, or one in 800, babies in the United States a year, according to the National Down Syndrome Society.

Sheffield said some parents worry about the potential burden of raising a child with Down syndrome, which does involve extra trips to the doctors, extended care when the child ages and lots of future planning. Braden has low muscle tone and is developmentally delayed.

Sheffield says all these challenges are manageable, which doesn’t mean the times have never been tough.

“I don’t want to be negative,” she said. “But to some extent you become ‘that’ family. It’s not a blatant thing. You just feel a little isolated. But you realize you have the same life you had before, just with a new person in it, and it’s really no big deal.”

Sheffield got involved with Reece’s Rainbow ministry and joined The Sisterhood, a support group for moms of kids with Down syndrome in the greater Sacramento region. Another mom involved is Beth Herrington, of Roseville, who has a 13-month-old daughter named Chloe. She also has four other kids, ages 9 to 14 years old.

Chloe was a surprise — Herrington got pregnant at 42. The chance of having a baby with Down syndrome increases with the mother’s age, but 80 percent of babies with the condition are born to women under 35.

“It was this great gift,” Herrington said. “I was excited. I didn’t mourn the loss of the quote-unquote perfect child.”

She describes Chloe — who has a small hole in her heart — as beautiful and larger than life.
“I always compare it to being in public with a celebrity,” Herrington said. “Chloe gets so much attention.”

A few months ago, Herrington convinced her husband that they should adopt a baby with Down syndrome. They found Olivia from Ukraine, who is 7 months old. They hope to bring her home by January.

Herrington also blogs and wants people to realize that babies with Down syndrome are “more alike than different.”

“What an unbelievable joy they are,” Herrington said. “Even for parents who think their world has ended, weeks later they see it’s the best child in the world. It’s not a scary, horrible thing. It’s wonderful.”

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