At Hope Story, there are two things we know to be true: 1. Parents of children with Down syndrome love their children, and 2. Many parents have a negative interaction with their medical professionals surrounding their child’s Down syndrome diagnosis.
We believe that if doctors can hear firsthand from families, it can change how they view having a child with Down syndrome and likely change how they deliver the diagnosis to families. We are passionate about helping medical professionals get to know families of children with Down syndrome.
As these relationships are formed, our desire is that medical professionals can see that while having a child with Down syndrome may be surprising news for a parent, it’s not bad news. We believe every parent of a child with Down syndrome is a story of hope for someone else and that their story can bring hope to new parents. In fact, we have built out a nationwide network of families who do just that. We call these families Hope Advocates. (Learn more about the Hope Advocate process by clicking here.)
For years we’ve dreamed of a way for even more medical professionals to have an opportunity to spend extended time with families who have a child with Down syndrome and learn more about their life experiences. This week, that dream became a reality as Hope Story hosted our first (of hopefully many) medical professional dinners, and the night exceeded our expectations! We invited local OB/GYN and pediatric medical residents to share dinner with some of our Hope Advocates (families raising a child with Down syndrome) and talk through some carefully crafted discussion questions we provided.
Afterward, the medical professionals had an opportunity to hear from doctors a little further along in their careers, who shared stories and provided resources to help them care for their patients.
In addition to rich dinner conversations with our Hope Advocates; each of the Medical Professionals in attendance received our Hope Stories Booklet for new and expecting parents, a handout on how to deliver a Down syndrome diagnosis with hope, a preferred language guide, and a list of additional resources (including several peer-reviewed resources.)
The goal of the dinner was to simply create a space for medical professionals to get to meet individuals with Down syndrome and learn about their stories, have fun, and eat some good food; we achieved this goal in spades. The feedback we have received from our table host families and doctors has been extremely positive. Here are a few observations we find especially interesting/encouraging.
- Over 77% of the doctors surveyed said they had never had more than a brief conversation with a family of a child with Down syndrome before the dinner.
- Over 88% of the doctors surveyed said they would use different words/phrases when delivering the diagnosis after the dinner.
- Over 88% of the doctors surveyed said they would encourage their patients receiving a Down syndrome diagnosis to connect with a Hope Advocate.
- Over 77% of the doctors surveyed said they had more resources at their disposal to offer to their patients after the dinner.
- 100% of the doctors surveyed would suggest a Hope Story Medical Professional dinner to other medical residents.
The entire event was free of charge for everyone in attendance. If you’re interested in learning how you can bring a Hope Story Medical Professional Dinner to your city, please get in touch with us!
If you’re a parent of a child with Down syndrome, the first step is becoming a become a Hope Advocate. When you sign up, you’ll receive a personalized Hope Kit to help you build relationships with medical professionals in your community.
If you’re a medical professional and would like to receive any of our resources, for free, or learn how to connect your patients to a Hope Advocate in their community; please reach out to us. We’d love to connect with you.
We’re thankful for the table host families and doctors who took time out of their busy schedules to participate in this dinner. We’re also grateful to each of our donors for making events like this possible; we could not do what we do without their support!
Our hope is the unique insight and tools the doctors received during our time together will help them deliver a Down syndrome diagnosis with hope. We believe building relationships between medical professionals and parents of children with Down syndrome have the ability to change the diagnosis experience for parents and we look forward to hosting more dinners like this in the future!