This past weekend, I exhibited and presented at the 2022 Down Syndrome Affiliates in Action (DSAIA) Conference in Las Vegas, Nevada. I discovered a resource I have not highlighted here and wanted to list other resources present that are recognized by professional guidelines to be given to new and expectant parents.
The number one concern new and expectant parents have when they are told they are expecting or have had a child with Down syndrome is whether they will have enough support to assist with their child’s needs. There have never been more resources for these parents. I will list those I met with at DSAIA in the order along the continuum of when the resources should be provided:
Lettercase/National Center for Prenatal & Postnatal Resources
Longtime readers are familiar with the excellent products created by Lettercase at the National Center for Prenatal & Postnatal Resources. While it might seem biased for me to describe them as such given that I serve as the bioethics specialist for the National Center, Lettercase is the only resource created with and recognized by all major medical organizations with the input of national disability support organizations.
Lettercase’s Understanding a Down Syndrome Diagnosis has been recognized as the resource to provide to expectant parents receiving a prenatal test result for Down syndrome. Note, it is not limited to just after a prenatal diagnosis. Given the marketing hype of cell free DNA screening as 99% accurate, parents and providers mistakenly believe that is close to or as good as a diagnosis. Hence why Lettercase is recognized as the resource to be provided these parents who are pre-decision as to which option they may pursue following a prenatal test result.
Understanding a Down Syndrome Diagnosis is available online, and anyone is able to order one free copy. Plus, it has been translated into more languages than any American-based written resource for supporting families learning they may be expecting a child with Down syndrome. More can be found at its website here.
Massachusetts Down Syndrome Congress’s National First Call Program
Joining my colleague Stephanie Meredith for a panel presentation was MDSC’s director of its national First Call Program, Sarah Cullen. I featured the First Call program at this post. Originally focused on families in Massachusetts, MDSC has since invested in developing its First Call program to field calls nationwide where new and expectant parents can contact a trained team member on culturally appropriate and non-directive counseling. I recall at the first DSAIA meeting in 2007 there being convoluted discussion about needing a national call number but then who would answer it and whether it would be staffed 24 hours. MDSC has stepped in to fill this need. Now, for every new and expectant parent receiving a test result for Down syndrome, support is just a call (or an email) away.
Down Syndrome Diagnosis Network
The Down Syndrome Diagnosis Network (DSDN) has been mentioned at a couple of posts. The DSDN is a Facebook-based organization where new and expectant parents join Facebook groups in their timeline, i.e. where they are along in their pregnancy or post-birth. The DSDN began (I believe) in 2014, or at least that was the first conference where they exhibited and I met their founders. Since then, the DSDN has experienced robust growth: supporting thousands of new and expectant parents; managing dozens of groups; and holding in-person conferences annually. Just like with the MDSC’s First Call program, with DSDN, support and help are just a click away.
The National Down Syndrome Adoption Network
I’ve featured the Down Syndrome Adoption Network (NDSAN) at previous posts. Its director, Stephanie Thompson, was part of the panel with Stephanie, Sarah, and Christy Cooper with DSDN. Unlike a national call number for new and expectant parent support, the NDSAN has pre-existed this century. It is a national organization fielding calls from all over and providing caring, compassionate counseling to new and expectant parents considering the option of adoption. The NDSAN maintains a registry of parents across the nation who are seeking to adopt a child with Down syndrome. While adoption is the least mentioned option providers counsel parents about, it is a very much viable option, thanks to the NDSAN.
Jack’s Baskets
While founded in 2014, this was the first conference I had the pleasure of meeting Jack’s Baskets’ founder and executive director, Carissa Carroll, along with their Director of Operations, Melody Schwartzbauer. The mission of Jack’s Basket is to:
to celebrate babies with Down syndrome. We strive to ensure that every new and expectant parent is provided resources and avenues of support within the community. We aim to educate medical providers on how to discuss the diagnosis in an unbiased way in hopes that having a baby with Down syndrome is celebrated like any other.
Jack’s Baskets does so through providing loving baskets with helpful resources, including publications from the National Center, along with other needed items, like blankets and onesies. Every other child is celebrated and Jack’s Baskets is working so that all children born with Down syndrome are, too. Through partnering with local organizations, Jack’s Baskets has connected thousands of families across the nation with their local support organization.
So Many Resources
As demonstrated at this year’s DSAIA, there are several robust organizations whose mission is to ensure families receive the support they need when receiving a pre- or post-natal test result for Down syndrome. These organizations are also engaged in medical outreach to raise health care providers’ awareness of these helpful resources to support families. There has never been more resources supporting families receiving a test result for Down syndrome for their pregnancy or new baby. If you are a new or expectant parent, I hope you will access these resources and share them with your medical provider for future patients.
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