Hidden Angels: American Families Saving Children With Down Syndrome

In Ukraine, children with Down syndrome are often sent to adult institutions.

ByABC News
December 26, 2011, 9:54 AM

Dec. 26, 2011 -- Tucked away behind the white walls of an orphanage in the eastern Ukrainian city of Donetsk, Kareen had no inkling of the life that awaited her.

At 4 years old, her fate was seemingly sealed. Within a matter of months, Kareen was scheduled to be transferred to an adult mental institution, where she would live out her life with no hope for a family or an education.

But one picture on the Internet of the little girl with Down syndrome was all it took for a 30-something Utah couple with three daughters at home to fly across the globe to bring her home. They knew virtually nothing about her, except the life of neglect she likely faced if left in her native Ukraine.

"Her eyes were really what spoke to us first," Kecia Cox said of that picture she found on the Internet. "They just grabbed us, and we just knew that she was saying, 'You're my mom and you're my dad, and you're supposed to come get me.'"

Children with Down syndrome in Ukraine are often abandoned at birth, deemed worthless by a struggling society that praises appearances. Institutionalizing these children at 4 or 5 years old alongside adults with severe mental illness is a common and accepted practice.
Ukraine's Hidden Angels: How to Help
ABC News gained access to three of Ukraine's mental institutions and documented the very reason Kris and Kecia Cox were so quick to save Kareen. The institutions were sorely underfunded, the children were often filthy and covered in sores and scratches.

They were seen injuring themselves and rocking back and forth in what experts say is likely an attempt to self-soothe. And most of the children with Down syndrome appeared years younger than their actual ages, a kind of emotional dwarfism doctors say happens after extreme neglect.

Administrators and caretakers, one with tears in her eyes, said they want better for the children but can't get the money from the Ukrainian government.

But there is a glimmer of hope for some. A growing number of Americans are clamoring to adopt children with Down syndrome from Ukraine and other eastern European countries and give them lives their biological parents never knew they were capable of having.

'People Just Have to Abandon Children'
The fall of the Soviet Union left Ukraine an independent nation grappling with economic instability. Thirty-five percent of the population lives below the poverty level.

Giving birth to a child with Down syndrome – or with any disability – is financially and culturally crippling. It is more common to abandon a child with Down syndrome than to raise it.

Angelina, the Coxes' adoption coordinator in Donetsk who declined to give her last name, described such a birth as a "disaster for families."

"It's sad, but no choice," she said. "People just have to abandon children. It wouldn't survive in this society."

She said that even on the street, the sight of anyone with a physical handicap was rare. In most places, even in the country's capital city of Kiev, there were no wheelchair ramps, and elevators were often not wide enough to accommodate them.

The disabled, she said, are hidden from view.

Children with Down syndrome are considered outcasts, she said, throwaways.

"That's why they place them to closed institutions They have to spend the rest of life being outside of society. Absolutely," Angelina said. "They ... have absolutely no choices, no opportunities in this society."

On Jan. 15, 2007, Kareen was born prematurely in a hospital in Donetsk, Ukraine. She was born with the umbilical cord wrapped around her neck and immediately rushed into the pediatric intensive care unit.

For three months, her parents, who had another child at home, came to visit her at the hospital. But then doctors revealed that their baby daughter was born with Down syndrome. Her parents terminated their parental rights. The little girl's paperwork notes that her biological parents "refused to take the child from the maternity hospital."

Just a month after Kareen was born, Kecia Cox was lying in a maternity ward getting the same heartbreaking news Kareen's birth mother would get. Her third daughter -- a 6 pound, 7 ounce girl named Bree -- was diagnosed with Down syndrome. Kecia and Kris were devastated.

"She's not going to be able to drive, and she's not going to go to school and she's not going to dance and you know you have all the future what ifs," Kecia said. "What if she can't do this, what if she doesn't have friends? What if she doesn't know how to talk?"

"And it quickly changed," she said. "And we realized that she was more like our other girls than she was different."

As Bree came home from the hospital and began therapy even as a baby that would help her reach almost all of her developmental milestones at the same time as her "typical" peers, Kareen was living a half a world away.

Social workers later told the Coxes that they believed there might at one time have been a hole in Kareen's heart, not surprisingly, since half of all children with Down syndrome are born with a heart defect. But no definitive testing was done, to the best of their knowledge.

While Bree learned sign language that would lead to speech development, Kareen picked up a few words here and there.

While Bree's outfits were selected from a closetful of clothes, Kareen wore clothing that was rotated among the dozens that passed through her orphanage.

Sometime in 2010 she posed for a photograph in a red shirt with a giant bow perched on top of her shorn hair.

And it was posted on the website for Reece's Rainbow, a five-year nonprofit organization that helps match disabled children -- most of them children with Down syndrome in eastern Europe -- with families in the United States.

Based in Maryland and run by founder Andrea Roberts, herself the mother of a child with Down syndrome, Reece's Rainbow has helped match nearly 600 disabled children from around the world with American families. More than 200 of those children with Down syndrome came from Ukraine.

In December 2010, Kecia, still heartbroken over a miscarriage in the summer of 2010, a miscarriage that came on the heels of an ectopic pregnancy, began looking through the Reece's Rainbow kids more closely.

She had discovered the site that fall and had initially gotten involved to help fundraise. But at Christmastime, after months of soul searching and wondering if there was some higher reason for her miscarriages, an idea began to take shape.

"That's when the adoption wheel started turning," she said, "and we kind of started looking at the pictures and we were like "Uh, is this really what we should do?"

"I was like 'OK, well, if we're going to adopt, I'm adopting a baby. Because I'm baby hungry, I want a baby, I'm not going to get a 4-year-old.'

In the wee hours of the morning in May, Kris and Kecia kissed their bleary-eyed daughters goodbye and , tears streaming down Kecia's face, drove away from their tidy Utah home, head to the airport, bound for Ukraine.

It would be 32 days before they returned.

On a hot spring afternoon, just days after they arrived in Ukraine, Kris and Kecia piled into a van and headed toward the orphanage. Kecia stared out the window and clutched a stuffed dog her daughters sent with her for Kareen.

Kris threw up and promptly blamed motion sickness, despite an obvious look of anxiety washed across his face.

But when the van pulled through the front gates and up to a large, multi-story white building, he leaned forward.

"Just ready," he said. "It's been a long time coming."

When the couple walked in, they were ushered into a large room with toys on a table and a large mural on the wall.

And then Kareen was brought in, carried by a nurse, her shortly hair carefully styled with tiny white rosettes.

"Priviet," Kecia said to the little girl – "Hello" in Russian. She reached out to touch her daughter for the first time.

Kareen regarded her new visitors carefully. She dutifully played with the rings on a stacking toy and looked through a bag of toys Kecia and Kris brought from Utah, immediately zeroing in on a toy cell phone.