Last summer, an expectant mom who received a prenatal diagnosis of Down syndrome through a new blood test described her experience of learning the news over the phone during a parking lot phone call on her lunch break. Devan Weathers, 32, was 20 weeks pregnant and said, “It may not have even been a two-minute phone call … I hung up the phone and started crying in the parking lot at work, all by myself.” “Nobody offered anything. Nobody told me about any resources,” said Weathers, who only received the services of a genetic counselor once she was in the delivery room. “I had to do all of that on my own.” [Huffington Post]
The paragraph above was taken from the “Never Alone” campaign site, but I could easily have written something very similar:
Five years ago, an expectant mom received a prenatal diagnosis of Down syndrome through an amniocentesis, and described her experience of learning the news over the phone in her office at work. Meriah Nichols, 36, was 21 weeks pregnant and said, “it may not have even been a two-minute phone call… I hung up the phone and started crying on my desk at work, all by myself.”
Only, in my case, they did offer resources, they offered plenty of resources, resources all aimed at terminating my pregnancy. The perinatal specialist advised me to consider my firstborn typically developing son, if I wouldn’t think of ourselves and of society, stating that our unborn child with Down syndrome, “will be a burden for life.”
I am pro-choice, pro-information.
And so, I asked for resources. I asked for information. I asked to meet parents of children with Down syndrome. I asked to meet people with Down syndrome.
I was denied each of my requests by the doctors, who simply said, “we don’t do that.”
I was alone. Alone in receiving the news, alone in the search for more information to allow me to better decide if I did in fact want to terminate, or if keeping her was the path I should choose.
I have been honest on this blog: I leaned towards termination. My experience as a person with a disability coupled with my fear that my child would be sexually abused on account of her intellectual disability pulled me in that direction, that no life for her would be better than a life of pain. My husband was the one who was adamant about keeping her.
Had I had access to the information that I sought, that outcome might have been different: I might have easily chosen to keep her. Through reading a book like the Lettercase’s Understanding a Down syndrome Diagnosis, I might have decided on my own that it would all be okay.
Understanding a Down syndrome Diagnosis
With the support of Tim Shriver, Lettercase is striving to reach as many parents, doctors, hospitals and community members as possible and help get information regarding a Down syndrome diagnosis out there, so that no mother, no person, will ever be alone again at the time of a Down syndrome diagnosis.
This beautiful little book is accurate and up-to-date. It’s concise and matter-of-fact. It’s not talking about precious angels and special gifts; it’s talking about our children with Down syndrome and includes helpful resources, information about pregnancy options, health and education services and also common medical conditions for babies with Down syndrome. It speaks to people like me.
And there are great pictures.
Our stories: #neveralone
Lettercase is trying to compile a database of diagnosis stories and to organize a network of supporters who they can mobilize on this.
Share your story, please, by clicking this link and scrolling to the bottom of the page.
Here it is again: #neveralone sharing your story
If you are an ally
If you are an ally for people with Down syndrome, please click on the link above and show your support for the importance of providing accurate, up-to-date, balanced, and medically reviewed information about Down syndrome following a prenatal diagnosis.
Let’s all make sure that none of us are ever left alone.
Meriah is the deaf, single mom of 3 kids (one gifted 2E, one with Down syndrome). A longtime career counselor, teacher and disability advocate, she loves helping to create community and empower parents, people with disabilities (and of course, parents with disabilities).