Group offers support for Down syndrome diagnosis

The Down Syndrome Diagnosis Network is a volunteer run, national organization whose mission is to connect, support, and provide accurate information to families with a Down syndrome diagnosis.

Now in its second year as a nonprofit, DSDN offers online, birth-club style support groups to parents and expecting parents who have received a Down syndrome diagnosis.

DSDN envisions a world in which parents have family-centered and factually accurate DS diagnosis experiences every time, and quickly know they are not alone.

When Antioch mom Jenny Di Benedetto's son, Gianluca, was born with Down syndrome in 2012, she immediately began looking for support and found a group of moms who were in the process of forming DSDN.

With a background in medical communications, Di Benedetto is passionate about effective patient-physician communication.

She currently heads up DSDN's Medical Outreach arm, which aims to empower medical providers to provide a Down syndrome diagnosis in an unbiased way. She wrote a medically-reviewed leaflet, "How to Deliver a Postnatal Diagnosis," summarizing the latest research alongside parent testimonials, to provide clinicians with an easy tool to help effectively communicate a DS diagnosis.

She and her husband, Nicolino, shared their diagnosis stories in the book "Unexpected" for DSDN to assure other new parents that they are not alone. She also contributed to "The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood," co-authored by DSDN co-founder Jen Jacob.

Locally, Di Benedetto is a trained speaker for the National Association for Down syndrome in Park Ridge, focused on informing medical providers about the current realities of life with Down syndrome, and many resources available to families.

We contacted Di Benedetto, who gave us the following information:

Q: Can you give us a general overview of what the Down Syndrome Diagnosis Network does?

A: The mission of Down Syndrome Diagnosis Network is to connect, support and provide accurate information to families with a Down syndrome diagnosis. We envision a day when all families would have unbiased, family-centered diagnosis experiences with up-to-date information and access to support and connections.

Q: How long has DSDN been active? How was the organization founded?

A: We met in a secret Facebook group, "Moms with Kids Rockin' the Extra Chromosome." Our children were born with Down syndrome in 2012 or early 2013 and we instantly began sharing feelings and experiences.

Through the sharing we developed friendships. Through the friendships we have given support. We've seen moms drive thousands of miles to meet up. We've watched moms show up at the hospital where another mom was with her sick baby. We've sent gifts, well-wishes and cards. We have protested. We've got each others' backs.

But, through it all, we've seen that not everyone had such a great start. Some found out prenatally and didn't feel their values were respected. Some heard "I'm sorry" when the doctor told them at birth. Most of us had a good experience, but it pained us that everyone couldn't start their diagnosis in an unbiased way.

Additionally, we wanted to help moms find the great information and resources that are out there and package it in a way that is relevant to those who don't immediately connect in a local group.

We started talking in May of 2013, and eight mothers joined together to form DSDN. We hope to recreate the empowerment we found in our group for new moms facing a diagnosis, and provide them with a mechanism to respectfully share feedback with their medical provider about their diagnosis experience.

DSDN officially launched on March 21, 2014, which is World Down Syndrome Day. We just celebrated our second birthday and are amazed by how much we have grown and accomplished in such a short period.

(The date for World Down Syndrome Day being the 21st day of the third month was selected to signify the uniqueness of the triplication of the 21st chromosome, which causes Down syndrome.)

Q: How does DSDN help people?

A: DSDN supports families by connecting them online within our support groups and in person through our partnerships with local Down syndrome organizations. We help families going through challenging circumstances in their journey, connect people managing similar medical conditions, and we empower members to attend conferences that aid them in being their best parent-self.

DSDN also works with medical providers, providing them the most up-to-date information on Down syndrome and guidance on how to deliver a DS diagnosis appropriately.

Q: What are some of your programs?

A: Physician feedback program: This program allows our members to provide anonymous feedback to their medical provider who delivered the Down syndrome diagnosis on how they feel the diagnosis was handled. DSDN follows up the feedback with evidence-based recommendations on how to deliver a pre- or postnatal diagnosis, and information about our organization to provide to future families looking to learn more about DS and support.

Rockin' Family Groups: We currently have 18 birth groups reaching more than 2,300 people, accounting for nearly 15 percent of all new diagnoses. These are online communities where parents interact with other parents who have a child with Down syndrome, based on the child's age. These groups are deliberately kept small to foster an environment where people can truly share and connect with each other. The groups help serve as an information and support network for parents who have children who rock an extra chromosome.

Rockin' Family Fund: RFF is focused on 4 distinct areas of support:

• Welcome gifts to all of our new families, including a celebratory note and welcome onesie for baby.

• Care packages to families to provide encouragement during their child's hospital stay or other difficult circumstances that may arise.

• Memorial wind chimes honoring a family's child whose life was lost too soon.

• Scholarships for families to attend the Rockin' Mom Retreat or a Down syndrome educational conference of their choice.

Rockin' Mom Retreat: This is our annual conference that serves as a time for our members to connect in person, work on service projects together, hear about the incredible things other Rockin' Moms are doing in their communities, and recharge their mom battery. The retreat includes a 5K walk/run on-site and remotely, for the local, national, and international DS communities to come together in-person and online to celebrate rockin' families.

Q: Tell us the story of someone who was helped by the DSDN.

A: There was a mom who reached out to DSDN when she received a prenatal diagnosis. She wanted to know more about Down syndrome and to meet other families with a child with DS. We connected her with her local DS organization and families near her. During her pregnancy, she joined our prenatal group and was able to talk with other moms who were currently pregnant about their feelings, medical care, registry items and generally have a group of people who were going through the same thing as her. When her baby was born, a local DSDN mom delivered a welcome basket to her and celebrated the birth of her beautiful baby girl. She transitioned into her DSDN birth club group after baby was born, and connected with all of the moms with babies born that year. A few months later, baby required heart surgery and her fellow DSDN Rockin' Moms provided online support and well wishes throughout. DSDN provided her with a care package, delivered by a local mom, and kept in close touch with her throughout. Baby is doing great now and mom attended our retreat last fall! We were all so happy to meet her in person and celebrate together as Rockin' Moms!

There was a mom in our prenatal group (women pregnant with a child with DS), who was on a business trip a state away from her home, who went into preterm labor. She was hospitalized and unable to fly home. She shared her circumstances in our Facebook group and her fellow prenatal moms all rallied around her with support and encouragement. The DSDN team saw the post and we got in touch with the local Down syndrome organization where she was hospitalized to arrange for them to visit her and help lift her spirits. Despite the best efforts to keep her from progressing in her labor, the baby decided it was time and was born in this hospital, several weeks premature. DSDN provided her with care packages and kept in close contact with her during her stay to make sure she was OK. Rockin' moms from the area visited her, alongside members of the local Down syndrome organization. When mom and baby were eventually released to travel home, we connected her with the local Down syndrome organization there, who were glad to meet her and baby and welcome her into the local community.

There was a mom in one of our groups who had a beautiful baby girl with a complicated heart defect. Baby was in and out of the hospital a lot, and her group was a safe place for her to share her thoughts, fears, hopes and struggles. The moms in her group were a safety net for her and provided her with support and love. Baby took a turn and spent a significant amount of time in the hospital. DSDN sent mom a care package and regular encouragement through cards and private messages. We were devastated when baby passed away. DSDN arranged for a local mom from a different birth group to attend the funeral and present mom with Memorial wind chimes engraved with baby's name. She also delivered a big, long hug from all of the DSDN Rockin' Moms whose hearts broke upon hearing the news of baby's passing.

Q: How can people who need help contact your organization?

A: If you or a loved one has a child with Down syndrome ages 3 years old and younger, connect with us through our website: www.dsdiagnosisnetwork.org.

Q: How can people who would like to volunteer or donate help out?

A: We are currently seeking donations to help support our Rockin' Family Fund. Our goal is to raise $15,000 this year to fund this program. You can donate to the RFF here: www.dsdiagnosisnetwork.org/#!blank-3/y59ww.

We also appreciate general donations that we can use toward our efforts to reach medical professionals with accurate information about DS and how to deliver the diagnosis. General donations are accepted here: www.dsdiagnosisnetwork.org/#!donate/c17je.

Q: Do you have upcoming events and/or fundraisers planned?

A: We have a "Share the Love" campaign starting in May. The funds from this campaign will go toward our Rockin' Family Fund. Last year we raised $10,000 with this campaign.

Our annual retreat is in Dallas this year, Sept, 9-11.

Q: What would you say is the most important piece of advice for parents whose child has been diagnosed with Down syndrome?

A: Congratulations on your pregnancy or the birth of your baby! Know that you are not alone in your journey, and there are so many families who welcome you to the community and are here for you whenever you are ready!