Having a child with Down syndrome may surprise some American parents in the delivery room, but thankfully, it's not shrouded in taboo here like it is in other parts of the world (in fact we're celebrating DS as these recent ads show). And while it's no secret that certain cultures view disability with fear and shame, a dialogue didn't happen until a heartwrenching story recently hit the news.
Samuel Forrest, a dad from New Zealand, faced a heartbreaking choice when his Armenian wife, Ruzan Badalyan, made him decide between staying in their marriage and keeping their newborn son, Leo, who was born with Down syndrome. In Armenia, where Ruzan gave birth, parents can abandon disabled babies, often leaving them to questionable care in orphanages.
In the end, Forrest chose to keep baby Leo, and he started the "Bring Leo Home" GoFundMe campaign to help him bring Leo back to New Zealand. Forrest's initial fundraising goal was $60,000, but—much to his surprise and delight— he's raised almost $500,000! He plans to send a part of the donations back to Armenia to support other families raising disabled children and an orphanage that cares for kids with Down syndrome.
This story has made me think about the choices we make as parents. We're constantly faced with tough choices every day, and if our kids have Down syndrome, autism, cerebral palsy, and other special needs, the choices are even harder and more complex. Personally, I don't think Leo's mom made the right choice, but I hear many parents of kids with special needs saying "they didn't choose this life." So I wonder what these parents would have done if faced with a delivery-room choice like Leo's parents. I wonder what I would have done. Would I have said "yes" to Liam, who has autism, if I knew about his disability from the moment he was born? If I knew about his autism during my pregnancy, would that have changed things?
During both my pregnancies, I wrestled with these sorts of ethical questions, eventually opting out of all genetic testing. And I'm glad I did. Because Liam, like baby Leo Forrest, is a child, not just his disability. Liam and Leo both have a life full of promise and possibility ahead of them in a world that, I hope, will someday accept children who have special needs with open arms and without fear or shame.
Jamie Pacton lives near Lake Michigan where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons, Liam (6) and Eliot (4). Her writing has appeared in the Autism and Asperger's Digest (2011-2013), Parents, and the book collection Monday Coffee and Other Stories of Parenting Kids with Special Needs. Find her at www.jamiepacton.com, Facebook (Jamie Pacton), and Twitter (@jamiepacton).
Baby Care Basics: What is Down Syndrome?
Image: Baby Leo Forrest from Bring Leo Home