Blog #222~Dear Doctor, A Down Syndrome Diagnosis, is a Hope Story
What is the right way for a doctor to deliver the news that your baby has Down syndrome either pre-natal or at birth? Over the weekend, I received a link from Nothing Down, called Dear Doctor http://www.nothingdown.org/ The short film link, interviewed parents who shared their experiences with their doctor. The delivery of the news of a Down syndrome diagnosis was often cold, stoic, and grim. In some cases, the doctors told the parents what their child couldn’t do, while others were offered the option to terminate the pregnancy. So how should a doctor deliver the news to parents that their baby has Down syndrome? Educating medical professionals, communities, and advocating for inclusion and acceptance, are some of the goals during the month of October, which is Down Syndrome Awareness Month. The more you understand Down syndrome, the less fear you will have about the navigating the challenges associated with the diagnosis.
I’m excited to share a new program that is going to change the way many medical professionals will deliver a pre-natal or birth diagnosis of Down syndrome. It’s called Hope Story!
Hope Story’s Mission:
“Hope Story exists to give support, encouragement and hope to parents whose child have received a Down syndrome diagnosis; to provide free resources to the medical community to help them deliver a Down syndrome diagnosis, and to find ways for parents of children born with Down syndrome to use their unique story to bring hope to others.”
Hope Story Helps 3 Main Groups:
*Parents whose child received a diagnosis of Down syndrome.
*Parents who have a child with a diagnosis of Down syndrome.
Hope Story will be providing kits to advocates who will partner with medical professionals. Hope Advocates will inform, educate and allow doctors to get to know someone with Down syndrome on a personal level. Tools in the Hope kit contain valuable information on how to deliver a diagnosis of Down syndrome, and a preferred language guide to help talk about Down syndrome with dignity, respect and hope. In addition, the Hope booklet addresses concerns a new parent may have about Down syndrome. Other tools include welcome letters, announcements, business card and training videos for Hope advocates.
For more information on Hope Story click here: @https://hopestory.org/about/
I’m looking forward to being an advocate for Hope Story, and the opportunity to work with medical professionals on delivering a positive pre-natal or birth diagnosis of Down syndrome. Giving hope to other families who have a child with Down syndrome, has been the fuel for my writing for many years. One thing I wish someone would have told me 24 years ago, when my son, Nick was born is this:
Babies and children with Down syndrome have to work harder with physical, occupational and speech therapy to hit developmental milestones, and yes it may take longer, but they will and it hit them, and it will be grand!
My son Nick, age 24 🙂
As we close to the end of October and Down Syndrome Awareness Month, I feel optimistic about the future of individuals with Down syndrome. We are moving beyond awareness, to acceptance and inclusion in society. The future looks much brighter, with more opportunities for individuals with Down syndrome. I’ve highlighted many success stories all month in my blogs, and social media listed below. Education and understanding about Down syndrome is the key, and Hope Story is taking charge to help medical professionals and parents. When you have knowledge and hope, the fear subsides.
That’s what is in my noggin this week. 🙂
Follow Nick and view more about Hope Story and the Dear Doctor film on social media:
Facebook and Pinterest @Down Syndrome With A Slice Of Autism