Washington D.C., Aug 7, 2014 / 16:17 pm
Advocates for those with Down syndrome are appalled and grieved by the reported abandonment of a baby who had been diagnosed with the genetic condition.
"It is such a bizarre and sad case," said Michelle Sie Whitten, executive director of the Global Down Syndrome Foundation, which uses research, medical care, and education to support those living with Down syndrome and their families.
"My reaction, the Down syndrome community's reaction, and really the international community's reaction is all pretty much the same," Whitten told CNA. "I think people are shocked, they are disgusted, and there is a certain amount of disbelief that this could happen in this day and age."
"I think it's good that everyone's reaction is the same. It sends a message that this is not normal, and this is not right," she continued.
Whitten responded to reports that an Australian couple abandoned one of their twin babies – named Gammy – with his surrogate mother in Thailand after discovering that the child had Down syndrome.
Pattharamon Chanbua, age 21, says that the Australian couple hired her as a surrogate for their twin babies. She told media outlets that they were informed of the boy's Down syndrome diagnosis part-way through the pregnancy and asked her to abort the baby boy, while keeping the healthy baby girl alive, but she refused on religious grounds.
The Australian couple told local media that they did not know about the boy's existence. But Chanbua maintains that when the biological parents arrived at the hospital, the two babies were together. She says they ignored Gammy and left Thailand with only the baby girl.
Chanbua then stepped up and claimed Gammy as her own, saying she would raise him alongside her two children. She voiced concern, however, about her ability to pay for his medical expenses. In addition to Down syndrome, the boy is struggling with a congenital heart condition and will likely need surgery.
As Gammy's story made international headlines, however, her fears were alleviated. An online fundraising project sponsored by Hands Across the Water has raised more than $235,000 in two weeks. The money will go toward Gammy's medical expenses and other living costs.
Although Gammy's case made global news, advocates for those with disabilities say that there are many other cases in which such children are abandoned by their biological parents. Thai authorities have said they will crack down on the largely unregulated surrogacy industry in the country.
While it may seem shocking that such instances occur – particularly in developed countries such as Australia – Whitten said that Gammy's case highlights the ongoing discrimination against those with Down syndrome.
Although improvements have been made over the past 20 years, enhancing both life-span and quality of life, she explained that there is not enough up-to-date information accompanying the diagnosis of Down syndrome.
"We take a pro-information stance. Accurate and current information about Down syndrome is imperative," she said. "Medical professionals and pregnant women need to be educated about the potential and the challenges of people living with Down syndrome."
Whitten believes that education is fundamental in cases such as Gammy's. She suggested that if the Australian couple had been more informed about Down syndrome, there may have been a very different outcome.
Enforcement of regulations is also an important factor in preventing similar situations, she added.
"I would hope that the full force of the Australian law would be waged, either against the couple or against the surrogacy agency," she said. "That would send a clear message about the future of these cases; that they will be dealt with just like any other abandonment or endangerment case."