Couple cherishes life with Down syndrome children
BY JIMMY TOMLIN
High Point Enterprise
Saturday, January 13, 2018
HIGH POINT — For 17 years, Shannon Newby had believed she would not be able to have any more children. Her son, Zachary, would be her only child — that is what the doctors had told her — and she was fine with that.
So in late 2014, when she and her husband, Dwight, learned Shannon was seven weeks pregnant, you could have knocked them over with a pacifier.
“For 17 years, no children came along,” Shannon said, “and then — surprise! — we’re having a baby.”
As overwhelming as that news was, that was only the beginning. A bigger surprise floored the High Point couple seven weeks later, during testing to determine the gender of the unexpected baby.
“We found out we were gonna have a boy,” Shannon said softly, “and we found out our boy would have Down syndrome.”
The Newbys had known of the risk. The likelihood of having a baby with Down syndrome increases significantly for birth mothers who are at least 35, and Shannon was 36 when she got pregnant, 37 when she delivered. Still, that scarcely softened the blow of learning their son would have a genetic disorder that would slow his physical and intellectual development.
As Shannon absorbed the news, every preconceived notion she had ever had about Down syndrome suddenly stormed her brain.
“It was really scary, because we were having a baby that was not the baby I thought he was going to be,” she said. “In your head, you have this perfectly healthy little kid who’s going to own the world, and then you find out you’re having a child who probably won’t be able to do anything for himself, who will probably sit in a corner and play with blocks his whole life. I had no idea what he would be capable of.”
Shannon remembers crying for several days — “for no reason at all, but just kind of grieving through that process,” she said — and then she got busy. She began researching Down syndrome online and talking with the real experts — other mothers of children with the disorder — to learn all she could about what to expect.
“What I learned was that children with Down syndrome are really very capable of anything,” she said. “They can grow up and have jobs. They can live independently, or sometimes at least semi-independently. They’re a lot like other children — they have the same needs of being loved and held and cared for.”
So in April 2015, when their son Nathan was born, the Newbys were prepared to take care of him. What they were not prepared for, though, was how quickly and deeply they fell in love with Nathan from the moment they laid eyes on him. No matter what the doctors said — nor what their subsequent blood tests confirmed — Nathan was not their son with Down syndrome.
In their eyes, he was simply their son — and that may have been the biggest surprise of all.
It has been nearly three years since little Nathan rocked Dwight and Shannon Newby’s world, and his arrival has triggered yet another surprise — the desire for even more children with Down syndrome.The process began last year and concluded in December, when Shannon brought home two children from Ukraine, Nicholas and Elizabeth, both of whom have Down syndrome.Initially, Shannon said, the idea was simply to provide a sibling for Nathan, but plans changed.”It started out as one child, but then it became two,” Shannon said with a laugh. “I remember when our social worker came out to do our home study, she said, ‘I can approve you for four children,’ and my husband said, ‘I don’t think so.’
He said, ‘If you approve us for four children, my wife will bring home four children. Don’t you do that.’ She did approve us for three, but I only brought home two.”
The Newbys adopted from Ukraine after learning that children with Down syndrome are spurned there.
“Because of social stigmas, the children born there go to an orphanage,” Shannon explains. “They don’t go home — they go straight from the hospital to the orphanage. The parents can take them home, but they opt not to. They don’t have the money for medical care, and there are no programs for physical therapy or inclusion.”
According to Shannon, other families who adopted from Ukraine told her children with Down syndrome are transferred from orphanages to adult mental institutions when they are 5 or 6 years old, and they spend the rest of their lives there.
“About 85 percent of them die within the first year of going there because the neglect is so severe,” she said. “That’s why we chose to adopt from Ukraine.”
After a lengthy fundraising campaign and a tenuous legal process, the couple adopted a boy and a girl — neither of whom is 1 year old yet — with two very different stories.
Nicholas was born to a wealthy young couple, and Shannon actually got to meet them during the adoption process. They chose not to keep their son because of the social stigma in their country.
“I asked the mom how she felt about me adopting her baby, and she said she was grateful he would have a home with a family that loved him, and that he would have opportunities here that he wouldn’t have there,” Shannon said. “But she also said, ‘If I could have him with me, that’s what I would do, but I can’t.’ It was just really, really sad, and I don’t know how they’re going to change the culture there.”
By contrast, Shannon never even met Elizabeth’s parents.
“When she was two days old, her mother and father left her at the hospital,” she said. “They signed away their rights, never called, never came again. They haven’t seen her since she was born. She was all alone.”
It was Nicholas and Elizabeth’s vulnerability, their hopelessness, that drew the Newbys to them.
“We really wanted to give children who didn’t have a chance, a chance,” Shannon said. “That’s what led us to this. A year ago, if you had told us we were gonna have two children from Ukraine, both with Down syndrome, I’d be like, ‘Yeah, you’re funny — there’s no way that’ll ever happen.’”
Spend an hour or so in the Newbys’ home, and you become a witness to the controlled chaos that has become their life. But it is not because they have three children under the age of 3, all with Down syndrome — the Down syndrome is irrelevant.
Nicholas and Elizabeth are a typical brother and sister. Facing each other as they lie on a quilt, they sweetly hold hands one moment, then fight about a toy the next.
“We’re already seeing their personalities come out,” Shannon said. “Nicholas is the calmer one — he doesn’t like for anyone to be upset — and Elizabeth likes to create chaos. She likes to torture him sometimes.”
Meanwhile, big brother Nathan has gradually adapted to having two younger siblings around competing for Mommy and Daddy’s attention.
“It was so funny, because he’s very interested in them, but when they annoyed him, he told them to go,” Shannon said. “I said, ‘Nathan, honey, they’re not going — they live here now.’ Sometimes he tries to help feed them, and sometimes he tries to take their bottle from them. So we’re learning what it means to have siblings, and sometimes it’s really sweet, and sometimes he wants to throw his ball at them.”
As Nicholas and Elizabeth have gotten settled, they have had numerous medical appointments so doctors here can assess their health. Ukrainian officials provided scarce information regarding the children’s medical history, but their adoptive parents do know that Nicholas has had heart surgery and Elizabeth had intestinal surgery. Nicholas may need surgery on his esophagus, and Elizabeth may be suffering from hip dysplasia.
Overall, though, their health is remarkably good considering the neglect they endured in Ukraine, Shannon said.
And they certainly seem happy enough.
Which brings us to what may be the highest hurdle the Newby children will have to get over — everybody else.
“I’m worried about how people will treat them,” Shannon said. “I’ve had some people be extremely nice, and I’ve had some people be extremely rude. Most people won’t say anything, probably because they don’t know what to say.”
They will stare, however. Shannon saw that with Nathan, and she has seen it with Nicholas and Elizabeth. Children with Down syndrome can have distinctive facial characteristics — such as slanted eyes, a flat nasal bridge and a protruding tongue — which catch the attention of people who don’t have the disorder.
“We’re all guilty of staring sometimes — even if we try not to stare, we still do,” Shannon said. “We want to understand.”
The Newbys encourage you to ask questions, to be inquisitive without being rude.
“If you want to talk to my babies, I’ll let you,” Shannon said. “If you want to ask me questions about my babies, I’ll answer them. I think sometimes parents are too overprotective, but I want you to know about my children. I want to educate you and help you see that they’re really not all that different. They’re actually pretty cool little people.”
Which is why the Newbys are now in the process of adopting yet another child with Down syndrome, this one from Bulgaria. Life’s just full of little surprises, isn’t it?