Down syndrome diagnosis: Find support, not propaganda

When the Massachusetts Down Syndrome Congress (MDSC) team established its Parents First Call Program to provide 24/7 support to families receiving a prenatal or at-birth diagnosis of Down syndrome, they knew what they were up against — outdated information available and pro-life pressure.

MDSC pushed forward, determined to make it work. Today, the MDSC has trained parents nationwide for local Parents First Call Programs with an emphasis on support and information, not pressure or dramatization. It’s not about talking a parent into keeping a child with Down syndrome — it’s about making sure that parent has accurate information about what having a child with Down syndrome really means.

Build credibility, trust

Within Massachusetts, MDSC has more than 50 trained parents prepared to respond to a new parent’s request for support. From 2010 to 2013, the organization has tripled its connections with parents who received a prenatal diagnosis.

“So much of the success of our program has come from building credibility and trust with medical professionals, who then refer families to us,” says Sarah Cullen, family support director for MDSC.

She explains the trained parents, “are here to listen, support and provide accurate, up-to-date, balanced resources for families.”

Cullen says MDSC is committed to connecting with families within 24 hours of a referral, and in the case of prenatal families, often within an hour or two.

MDSC’s Parents First Call Program offers support to parents in two ways.

• Provides accurate, up-to-date and balanced information
• Gives parents the opportunity to speak with a trained parent volunteer

Why does training matter?

“It is important to meet parents where they are,” Cullen explains. “Some may want lots of written information, some may want to speak with a few other parents, some may even want to meet a child with Down syndrome, others may want information mailed to their home, but are not ready to connect with another parent. We provide multiple options based on the needs of each family.”

For the Down Syndrome Association of Greater Charlotte (DSAGC) in North Carolina, meeting Cullen and learning about the Parents First Call Program was a major step toward increasing the organization’s outreach to the medical community and providing sensitive, unbiased support for families throughout North Carolina.

Like MDSC’s mission, DSAGC focuses on the importance of meeting parents where they are emotionally. “If they’re not ready to connect, we won’t force that,” says Terri Leyton, program director for DSAGC. “If they are ready and want a lot of information, we’ll give them that, as well.”

MDSC training curriculum

Developed with input from the medical community and parents, MDSC’s Parents First Call Program training focuses on the following:

• Overview of the genetics of Down syndrome
• Review of current screening and diagnostic tests
• Sharing personal stories of how the diagnosis was received and individual responses to the diagnosis of Down syndrome
• Exploring the range of emotions that may accompany the diagnosis, including grief
• Active listening skills
• Local resources
• The operational process of supporting a new or expectant family

One mother’s story

Alice (not her real name) and her husband received a prenatal diagnosis of Down syndrome for their baby and were among the first families to access newly established DSAGC’s Parents First Call Program.

The connection came through their genetic counselor, who quickly reached out to DSAGC when Alice and her husband acknowledged, “we were too overwhelmed to do so ourselves, but we knew on some level how valuable this could be,” Alice shares.

“We were in a lot of shock and very overwhelmed,” Alice remembers. She says after they shared their daughter’s diagnosis with family and loved ones, they received an outpouring of support and prayers, but at the time of the diagnosis, “we didn’t have anyone who could relate to what we were going through, which is/was a lot.”

Meeting their match

The family was matched with another mother who had recently given birth to a beautiful boy with Down syndrome. “She was open and honest with her heart and provided such a great sounding board, having previously gone through… what we were going through. It was the first time we could talk to someone that ‘could relate,’ and we didn’t have to sensor anything with her, because she had been where we were and just understood.”

Advice for other parents

“No matter how private of a person you are,” Alice says, “at some point, you will benefit from talking to someone that has been in your shoes, and the [Parents] First Call Program is a great resource if you don’t have someone in your personal life that has been where you are to reach out to.”

Alternatives to a Parents First Call Program

Families can receive a variety of updated, unbiased resources both online and by reaching out to an organization by phone.

“We will connect and send our welcome package to anyone who calls!” says MDSC’s Cullen. “In fact, we just sent a package to a family in Romania where there was no local Down syndrome organization [or] connections.”

Stephanie Meredith authored the Lettercase pamphlet, endorsed by Down syndrome organizations and the medical community as the gold standard of unbiased, updated information. She says any information shared with expectant or new parents, “should be reviewed by medical experts to make sure it’s accurate and balanced to meet their standards for sharing with their patients.”

Meredith points out that information is essentially useless if the medical community considers it biased and thus unreliable.

Identify updated, unbiased information

Campbell K. Brasington, MS, CGC, and pediatric genetic counselor at Levine Children’s Hospital at Carolinas Medical Center in Charlotte, North Carolina, offers the following advice for locating materials that will provide up-to-date information about Down syndrome in general and specifically the spectrum of abilities and opportunities people with Down syndrome continue to have.

• Check the date on any books or materials about Down syndrome.
• Consider the source. Is the material coming from a reputable source, such as a local or national Ds advocacy organization?
• Does the material appear to be balanced, sharing both the abilities and challenges those with Ds face?

Brasington warns against these red flags:

• Information more than 10 years old
• Materials from a source that appears to promote a specific agenda
• Materials that are either overly positive or overly negative

Meredith explains further. “When we train local Down syndrome organizations to do medical outreach, we advise them to avoid the following — cultural insensitivity, emotional pleas, political discussions, judgmental comments, stereotypes about Down syndrome, physicians, or hospitals, misinformation and long personal stories.

“Materials that have not been reviewed by experts or that seem lopsided in the way they present information also lose credibility with medical providers and their patients.”

Role of genetic counselor

Genetic counselors can also be a source of information and support. “The genetic counselor is there to help parents find whatever information or resources they need to answer that particular family’s questions,” explains Brasington.

“Whether it is after a prenatal diagnosis or after the birth of a baby with Ds, genetic counselors are especially trained to listen to families’ concerns and offer nonjudgmental support and guidance. They are familiar with local and national resources and can put families in touch with local support groups and early intervention programs.”

Additional resources

• Expectant parents who want to learn more about other parents’ experiences may enjoy reading Downsyndromeblogs.org
• Expectant parents interested in a more faith-based perspective may be interested in “Light at the End of the Tunnel” or “A Good and Perfect Gift,” both by Amy Julia Becker.

More about Down syndrome

The link between Alzheimer’s disease and Down syndrome
I have Down syndrome and run my own business
Divorce: Does “Down syndrome advantage” exist?