Down Syndrome child via Shutterstock
When Samuel and Ruzan Forrest first learned their son, Leo, had been born with Down Syndrome, the married couple two had very different reactions: Raise him like they would any other child; put him up for adoption.
They were at an impasse. Samuel wanted to keep Leo, but Ruzan did not. One week later, the couple divorced. Ruzan renounced her mother's role and fled back to her native Armenia, leaving Samuel behind to raise Leo alone in New Zealand. She has not seen her son since.
It's been a year since the Forrest couple's story first hit the media, but just last week Samuel was back in the headlines with an update on his life with Leo. Their story is an important one, because it lends itself to a greater exploration on the topic of Down Syndrome. And it's timely as well, as January is National Birth Defects Prevention Month.
One reason this story has generated so much interest is that while Ruzan's reaction might be considered extreme, it's actually not that uncommon. Unfortunately there's a great deal of shame, uncertainty and confusion that comes with having a child with a disability -- particularly Down's, even though it is the most common genetic birth disorder. And it has become much more common over the last 36 years.
Each year, approximately 6,000 babies are born with the disorder, or roughly 1 in every 700 births, a rate which is 30 percent higher than in 1979. With women having children at a later and later age over the last three decades -- and increasing age being one significant risk factor for the condition -- this rise, unfortunately, is understandable.
Other than child's developmental challenges, there are financial ones as well. Raising a healthy child itself is costly, but factoring in the cost burdens magnifies the problem substantially. For example, the Centers for Disease Control reports that medical costs for a Down's child are more than 12 times higher than a child without the condition.
And with 50 percent of these children also born with a congenital heart defect, the costs over a lifetime are even greater. In fact, the actual and psychic costs can be so overwhelming that it's no surprise that many couples eventually choose to place these kids up for adoption. Adoption agencies committed to children with special needs, such as the National Down Syndrome Adoption Network and Love Without Borders, have seen greater traffic in recent years.
That said, a review of termination rates of fetuses diagnosed with Down's Syndrome shows that between 1995 and 2011, "evidence suggests that termination rates have decreased in recent years," giving rise to the notion that these children are experiencing greater acceptance in society.
Moreover, improvements across the health, education and community sectors have reduced the range of issues Down's children and their parents are facing. For example, improvements in healthcare has led to increased life expectancy and improved quality of life for Down syndrome kids. Today, an individual can expect to live upwards of 60 years compared to just 25, which was the prognosis in 1983.
What's more, parents can receive support from organizations like the National Down Syndrome Society, which provides educational and informational resources specific to raising a Down's child. And last fall, for the first time, the condition was brought to the mainstream as a young Down syndrome model, Madeline Stuart, was welcomed on the runways at New York Fashion Week.
Down Syndrome remains the most common genetic disorder to date. There's no question about it: the emotional and financial costs are high. But efforts to provide more resources towards health and education -- combined with a shift towards mainstream acceptance --have again brought this condition to the forefront.
And as for Samuel and Leo, "He's generally a very happy kid," Forrest told ABC News. "He's got a sense of humor ... in many ways he's not really different than a lot of other children."
