Baby Leo's case highlights plight of disabled children

A story about a baby born with Down syndrome in Armenia and his parents resulting separation went viral last week. The mother and father have publicly released differing accounts of the story, but despite muddy facts, the case exemplifies the tragic reality for many kids around the world born with disabilities.

Samuel Forrest, originally from New Zealand, said his wife gave him an ultimatum within hours of their son Leo’s birth on Jan. 21: Put the baby up for adoption or get a divorce. Forrest took the baby, and his wife, Ruzan Badalyan, filed for divorce the following week. Forrest went public with the story last week and started an online GoFundMe campaign to raise money for his son’s care. As of this morning, he has raised almost $500,000.

After a week of silence, Badalyan posted on Facebook in English and her native Armenian, saying Forrest made the decision to take Leo to New Zealand without her and that she did what she thought was best for the child.

“I had to make the most ruthless decision in my life within several hours,” she wrote. She said she decided to give Leo up because of a lack of social infrastructure and government support to help children with disabilities in Armenia, the possibility of “renewed war with our hostile neighbor,” and her salary of $180 per month as the sole source of income for herself and Forrest.

“I would not be able to raise my child with special needs,” she concluded.

Armenian families are allowed and even encouraged to place disabled children in state custody immediately after birth. Societal norms enforce the idea that disabled children are better off in institutions than in families. A special report in the Armenian Weekly in 2012 noted more than 80 percent of children in orphanages in Armenia have at least one living parent.

Michael Gallagher, founder of Chosen and Dearly Loved, a ministry advocating for children with special needs globally, said many cultures share the prominent idea that institutionalization is best for disabled children: “That worldview runs deep.”

Gallagher recalled a story about a couple who went to Russia to adopt a child with Down syndrome. A judge told them they should not adopt the child because the child belonged in an institution. “Basically that it was not fit for a family,” Gallagher said.

He blamed the roots of this crisis of abandonment on the missing value of the child but also noted that fear remains a silent barrier.

“People are intimidated. It is daunting,” he said. “People don’t see the person, the individual child, involved in the situation.”

Gallagher and his wife Mandy, who have adopted three children with special needs, helped start an orphanage in Uganda that cares for more than 20 special needs kids. The team from the orphanage also provides training and support groups for more than 70 families in their community, strengthening them to care for and keep their special needs children. He calls this “family preservation.”

Gallagher insists just pushing for orphan care or adoption is not enough: “It can’t be. It really can’t be. Otherwise we’ll never gain on this crisis. We have to reduce the number of kids being orphaned in the first place.”