Our story started with our third daughter, Isabel, being born on August 17th, 2012. We found out shortly after her birth that she was showing signs of having Down syndrome. My husband and I were terrified because we knew nothing about Down syndrome. In fact, neither of us had ever met a person with it. We did what most people do in this situation and we sought out information online. We learned a lot. We learned that children with Down syndrome are often educated in school with their peers. We learned that people with Down syndrome are living longer lives, going to college and working at jobs they find important.
This information was encouraging but in the midst of finding it, we also found a lot of terrible information; information that was false but also information that we just weren’t ready to digest so early on in our journey. You see, we weren’t ready for the full encyclopedia on Down syndrome. We just needed the cliff notes to get us by until we could fall in love with the wonderful baby girl we had been given. Instead, we were left feeling overwhelmed and quite honestly scared by the images and information we were finding.
While trying to take a crash course on Down syndrome, I stumbled upon a website called Babycenter and their Down Syndrome Parents page. It became a great source of information for me as I learned how to care for our infant girl and got insight from other parents on the feeding issues we were having. While there, a mom posted that she was starting a private group on Facebook for moms with babies born in 2012 and 2013. I messaged this mom to join and thus began my journey as a Rockin’ Mom.
Within a week of joining this Facebook group, I could see the connections and friendships forming. These moms were grateful for a place to share their deepest concerns. I quickly learned that Jen Jacob, who started this Rockin’ Mom group, truly had a heart for supporting moms. Our group grew quickly and we soon had over 100 moms.
At this time, our family began to also seek out local support. We started attending a parent group near us and attended meetings and events when we could. Early on, I met some moms with babies around Isabel’s age. One in particular was really struggling as her daughter was born with some complex medical needs. I remember her telling me “I hate Down syndrome”. I invited her to join our Facebook group and she, too became a Rockin’ Mom.
As moms began sharing more in our Rockin’ Moms group, I learned that not all diagnosis stories were equal. I heard terrible stories of moms being told “I’m Sorry” and some moms feeling pressured to terminate who had a prenatal diagnosis. As these moms began to fall in love with their child and learn more about Down syndrome, they began to feel anger that their diagnosis experience was so traumatic.
You see when families are told:
“I have bad news”
“Do you want to terminate?”
“Your baby is broken”
“Your child is better off dead”
“Your child is not able to do anything”
I learned that unfortunately, these terrible experiences were not unique to our group. In fact, for every family receiving a positive diagnosis experience in the United States, there are 2.5 families who have a negative experience (reference).
These stories broke my heart. I knew that other organizations were doing a lot in this area but I began to feel strongly that an organization was needed that was solely devoted to the diagnosis period. Not only did I want to change how the diagnosis was delivered, but I felt that families with a new diagnosis needed to find a safe place to go upon getting the news. They needed a place just for them. It was with this goal in mind that I approached Jen Jacob about starting a nonprofit devoted to this cause. We gathered together an Advisory Board and eventually Down Syndrome Diagnosis Network (DSDN) was launched on March 21st, 2014.
We now have nearly 4500 members in our Rockin’ Mom and Dad groups! Through our Rockin’ Family Fund we can provide these families with the following: a welcome gift when they join a group, care gift when experiencing a hospital stay, a scholarship to attend a Down syndrome related event and a memorial gift when families lose a child. In addition, DSDN holds a Rockin’ Mom Retreat each year to provide moms and opportunity to connect, recharge and be inspired.
In addition to supporting families, DSDN partners with over 90 local Down syndrome organizations in providing them with brochures and resources to assist them in new parent support and medical outreach. As an organization, we attend Medical conferences to talk with physicians about how the diagnosis is delivered. We also speak to local organizations about the importance of medical outreach and support to new families.
What has been the most rewarding for me is to watch the transformation of our parents. Many start off so incredibly scared and alone. As they find support, information and connections, they begin to move away from fear and they reach a place of acceptance. After acceptance, many of these parents move on to become advocates for their child and for other children with Down syndrome. So many of our members are giving back in some way including the mom I met early on, who hated Down syndrome. They have: started local support groups in their area, gotten on the board of their local Down syndrome organization, volunteered their time and resources, reached out to new families in their communities and more! Recently I began the process of compiling some data on the available in-person support groups in Minnesota. As I looked over the parents who were heading up parent groups, I was amazed to find that so many of them were moms who were DSDN Rockin’ Moms. It is truly amazing!
I also know that we have much work to do. As DSDN looks to the future, our goal is to reach more families, especially underserved families. We are currently compiling a comprehensive database of local support options that exist for families so that more parents can find support when they need it. We also are working to provide more up-to-date and relevant information to families on our website so they can find the answers they need to their questions. In addition, we have created a Medical Advisory Board in 2018 so that we can continue to try to change that diagnosis experience for new families.
This work could not be possible without an ever-growing team of volunteers, board members and donors. It is humbling to see what people can do who share DSDN’s mission and vision. As we enter 2018, I want to thank each of our board members, volunteers and donors who make our mission a part of their heart’s calling. Together we truly are stronger!
Heather Bradley is the co-founder of Down Syndrome Diagnosis Network and currently serves as President of DSDN’s Board.