Hidden Angels: American Families Saving Children With Down Syndrome

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

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."

'I Think I Found Our Daughter'

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.'

And it was never there," Kecia said. "We would come home at night and, you know, get up, get on our laptop and sit in bed and look through all these pictures of the babies and nothing stood out."

And then one day, when Kris was at work and Kecia was on the computer at home, she clicked on Kareen's picture. It was one she had seen before, but this time something pulled at her.

"When I came in and we sat down and started talking, she, I mean she just burst into tears," Kris said. "Basically just said, 'I think I found our daughter.'"

Kris admitted he was hesitant at first. The couple, each born into families of six children, had wanted a big family but had never considered adoption.

Then they learned that Kareen, a month away from her fourth birthday at the time, was already scheduled to be transferred to an adult mental institution.

And with Kecia going full steam ahead and Kris more cautiously optimistic, they turned to their three girls and told them they'd like to bring home a little girl from Ukraine.

From that point forward it was a family effort. Kecia and Kris saved every penny and held yard sales and other fund-raisers to pay for the $30,000 adoption.

The girls -- Kyra, 9, Adrie, 6, and Bree -- made bookmarks and manned lemonade stands. And perhaps the biggest sacrifice for three children, they dumped out their jar of coins they'd been saving for a family trip to Disneyland.

Why the Coxes would choose to bring a second special needs child into their family is a question they get asked often.

"It's not new to us. You know we've learned you know what raising a child with special needs is," Kris said. "And it's wonderful. It's not something to be feared. "

"We have more challenges because we have two children with special needs, but I also look at it as we also get double the blessings and the good things that come from having a child with special needs," Kecia said.

Bree, she said, has brought the family "pure happiness. And joy."

"And she just is unconditionally kind and loving and she's been teaching all of us how to do that," she said.

'She's Not Orphan Anymore'

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.

As Kris sat on the floor, motioning for Kareen to come see him, she slowly made her way over. She then melted into his arms for the first hug.

"It was exactly what I needed," he said later. "I mean just you know, just kind of a reassurance that what we're doing is right."

And with that, the meeting was over. It lasted just 10 minutes.

Kecia and Kris, alternately excited and overwhelmed, were quickly ushered to a notary. After just three days in Ukraine and only 10 minutes with Kareen, they were asked to confirm whether or not they wanted to adopt her.

They signed the papers on the spot.

"She's not orphan anymore," Angelina said.

They returned to the orphanage the next day to start a routine that would last them the next 3½ weeks. They took Kareen to a small playground on a lot of unmowed grass outside the orphanage.

As Kris carried her around the playground -- she was a Daddy's girl from the very start -- Kecia touched Kris' chest and told Kareen, "Papa."

"Papa," Kareen responded back, touching Kris' chest as Kecia had just done.

They spent that first morning getting to know her. She again rooted through the bag of toys the Cox girls had sent from the U.S. Once again, the toy cell phone was a big hit. The My Little Pony, not so much.

They gave her a small child's board-book filled with photos of her new family. As Kareen turned the pages, she stopped on one page in particular. It was Bree's photograph.

"Bree," Kecia and Kris coaxed her.

"Beeeee …." she responded.

"It's scary to think that had we not been here and been able to you know be here as quickly as we were, it's scary to think what would have happened," Kris said. "This precious little girl would have you know just been you know written off and just given no chance in life."

It was a successful first playdate. But they couldn't help noticing the differences between their newest daughter and Bree.

While Bree jumped and bounded with the enthusiasm of a typical 4-year-old, Kareen -- her skin pale from years spent indoors -- moved with the unsteady gate of a child just learning to walk. While Bree had a full and developing vocabulary, Kareen seemed to speak just a few basic words.

The Coxes, interrupted only by meal breaks, spent the rest of the day with her. They would go back each and every day until the day they left with her never to return.

And they announced she would come to the United States with a new name -- Mia Kareen Cox.

Behind the Institution Gates

It's hard to estimate exactly how many special needs children are institutionalized across Ukraine. Some human rights workers estimate it could be in the tens of thousands. But not all come with proper documentation. And others are simply dropped off and abandoned.

Volunteers Misha Glazov and Alla Vasilieva have been visiting orphans -- special needs and typical children -- for years as part of their charity organization, Bible Orphan Ministry. For the special needs children, they are the only visitors most of them get.

Both Glazov and Vasilieva were sent to orphanages as young children and know exactly how these children feel.

When they drive up to a girls' institution for ages 5 to 35, the girls surround their van, pulling at them and their visitors for hugs, pictures. It is obvious both how much they crave attention and how little of it they get outside of these visits.

"All the time when we come them they say 'Mommy or Papa,'" Vasilieva said. "And I think that they understand and want to be in family."

At the girls' institutions, most of the girls and women have shorn hair. Their teeth are decaying or have fallen out. Most are covered in bug bites and scratches. Vasilieva explains that they often see the girls in the same outfit visit after visit.

They bathe about once a week.

One little girl with Down syndrome, named Masha, clings to her visitors. She looks to be about 3 years old, but is actually 7. Experts say this is a type of emotional dwarfism when a child neglected at a young age fails to thrive physically as well as emotionally.

But the conditions at the girls' orphanage were better than the boys' facilities ABC News visited.

There, the conditions ranged from bad to heartbreaking.

At one institution, where the smell of mold permeated some of the rooms and hallways, the boys sat and listened to Glazov and his ministry volunteers sing and tell Bible stories.

A 23-year-old man -- whose reason for being institutionalized wasn't immediately obvious -- told ABC News through a translator that he had been there for 15 years. When asked about his dreams for the rest of his life, he said he'd like a house and a family.

At this institution, an administrator spoke with ABC News about her attempts to get more money from the Ukrainian government for better food, more clothes and repairs to fix a building that used to house older boys but now sits vacant after the ceiling fell in.

She then cried, saying simply that it was hard for her to want more for the children she oversees, knowing the help may never come.

At a third institution, again for boys and men ages 5 to 35, the reason so many Americans were rushing to file adoptions papers for children with Down syndrome became shockingly apparent.

One step into the main institution was met with a wall of sickening odor, the smell of urine and feces. Several boys were left to sit in a sparse room that consisted only of wooden benches lining the walls and thin blankets spread across the floor.

This, ABC News was told, was where the boys typically spend their days. They did not read or look at books. They did not watch TV or play with toys.

They sit, day in and day out.

Just next door in a building not seen from the street was what's known as the izolaytor, or infirmary. In the other institutions, the izolaytor was reserved for sick children who would stay to recover before rejoining the general population. But in this izolaytor, a group of about 20 men and boys lived permanently.

One older boy with Down syndrome stared at his group of visitors from his bed, a thin mattress on wood planks. He began hitting himself in the head with a closed fist. This same boy had been known to bang his head against the wall.

Other young men were covered in sores and frighteningly thin. One young man looked distrustingly as one of his visitors reached out to touch his shoulder. His legs and arms were covered in angry red bed sores.

And then, there was Misha, a young boy with Down syndrome. It was unclear why he had been chosen to live alongside the most severely mentally ill in the institution.

He did not speak but did make attempts to console his fellow patients when they screamed or rocked. He sat nearby as Boris, a 12-year-old boy, repeatedly hit himself in the face so hard that his head was covered in angry bruises and welts. The nurse standing in the doorway simply watched.

Boris was later removed to his room and to his crib where, even as a preteen, he still sleeps.

The caretakers told ABC News they were overworked and often overwhelmed. There are just two nurses for the boys during the day and just one at night. They admitted to giving the boys injections to make them sleep. At times the boys have been restrained with shirts and sheets.

Glazov and Vasilieva know exactly how bad these children have it. But even Vasilieva was stunned when she first saw the conditions.

"First time I came to mental institution and I saw the children I was shocked," she said. "Because I live in Ukraine and I did not know about these children."

Though Vasilieva had been visiting children with Down syndrome for years, it was only recently that she realized they were capable of being educated.

"We thought they cannot study, they cannot have education and we knew that they're life is real hard, but we did not know we could help them," she said. "We thought they understand nothing."

The myth that Down syndrome is a severe mental illness and a scourge on society is an overwhelmingly common one.

Oksana Filipyshyna, Ukraine's deputy head of the Unit for Child Adoption and Child Rights Protection, sat down with ABC News and admitted that more needs to be done to educate Ukrainians about children with special needs, especially Down syndrome.

Before the Americans started coming for them, Ukrainian children with Down syndrome were rarely, if ever adopted.

"The thing is that Ukrainian citizens want to adopt little and healthy baby," Filipyshyna said in Ukrainian, speaking with the help of a translator.

She spoke of the need for rehabilitation facilities and other services that would help Ukrainian understand Down syndrome. But she repeatedly denied that children with Down syndrome were sent to live in mental institutions alongside adults.

"I'm not aware of such facts," she said. "They are not being treated in the mental institutions."

When told about the children that were covered in sores and bruises and left in cribs for years, Filipyshyna said this was not the type of care she wants for the children.

"If this kind of situation is existing of course it is shocking. There's no way to explain it," she said. "And we have to fix it. To fix it as soon as we can."

But when pressed about how the government will fix a problem she was seemingly unaware of, she became nervous and asked to stop the interview.

After a few moments, she continued and spoke of how she would someday like to see more families keeping their children with Down syndrome -- children she called "sunny."

"The country's not as responsible as it should be," she said.

Mia Comes Home

After 32 days in a cramped apartment in Donetsk, Kris and Kecia Cox left for their daughter's orphanage for the last time.

They exchanged some new girls' clothing to be able to take home the dress Mia was wearing when they first met her as "Kareen."

After changing Mia into a new outfit, they told her to wave good-bye to her caretakers. Then Kecia carried her out of the orphanage doors. She was now part of their family.

"She smiled a little when we first met her," Kecia said, "but after only a couple of days she had a sparkle in her eyes that she did not have before."

As Kris and Kecia walked with her through the orphanage gates, Mia stopped to look behind her. She never looked back again.

For the next several days, as her paperwork to travel to America was finalized, Mia was flooded with all the "firsts" she had missed out on.

Her first car ride. Her first ice cream. Her first McDonald's. Her first chance to chase pigeons. Her first pillow fight with her dad. Her first time sleeping under the same roof with her parents.

"She didn't know all the opportunities she was going to get here. All she knew was that these two people loved her and that she was worth something now," Kecia said. "And you could see it in her eyes."

When her feet touched down on U.S. soil for the first time in June, Mia Kareen Cox became an American citizen.

There was a crush of family and friends waiting for them at the Salt Lake City airport. Tears flowed as Kris and Kecia squeezed the daughters they hadn't seen in a month. Mia's new grandparents got their first look at their newest granddaughter. And Kyra, Adrie and Bree got to hug their new sister.

For her part, Mia seemed as happy as could be with the attention. Pictures from her homecoming show her with a wide grin on her face.

That night she went to sleep in her own bed, next to Bree's.

In the weeks that followed, Mia changed a little bit more every day. Her pale skin became rosy from spending time in the summer sun. Her once unsteady gait morphed into a toddle and then a full blown run. Doctors say her weak legs are much stronger and she will eventually walk normally.

Her hair grew in thicker and she gained weight, benefitting from a new diet that included fruits, vegetables and protein.

She began learning sign language and now signs words like "shoes" and "more." She says "bye-bye" and "Papa" or "Daddy" and knows what it means to "give loves" – to wrap her arms around her parents or her sisters for a big hug and kiss.

Her sisters have taught her how to play on the swingset, how to terrorize the backyard in a motorized Barbie jeep, how to put on dance parties in the playroom. For Halloween she was a watermelon to Bree's strawberry.

"They were just so excited to have her home. They just hugged her and kept saying how cute she was," Kecia said, tearing up." They haven't for one minute questioned that she's part of our family. They've just taken her in and she loves them."

There have been a few small hiccups, some sibling rivalry with Bree and an unwillingness to cry, something Kecia and Kris think was discouraged in the orphanage.

She's also overly polite at the dinner table, preferring to eat all foods, even potato chips, with a fork.

"We have to Americanize that a little bit," Kecia said.

And in the weeks after Mia's homecoming, another change to their family came. Kecia and Kris learned that after years of trying, they had gotten pregnant while in Ukraine, with identical twin girls.

The girls' pediatrician Dr. Terry Omura said he believes Mia should catch up to Bree quickly. He has referred her to a cardiologist to check out the supposed murmur doctors in Ukraine heard when Mia was a baby.

"I was actually fairly impressed that she was very well adjusted, very outgoing and very, very social. I was kind of expecting her to be more withdrawn and quiet," Omura said. "But the first thing she did was jump up on the exam table and she started playing with my stethoscope."

At home, Kris and Kecia have no doubt that Mia will continue making up for lost time.

"We haven't even touched on her capabilities. She has so much to give and that the world gets to see that now ," Kecia said. "She doesn't have to be in a little white room hidden away because of an extra chromosome."

Their message to other families?

"I think I would say there's a great need you know to help these kids. There's a lot more kids that we would have loved to bring home," Kris said. "You know to see the circumstances that they live in – it's tough to have to walk away from them and just hope someday a family will come for them."

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