Families surprised by Down syndrome diagnoses get support from this network

In a March 4 Facebook post, the National Down Syndrome Adoption Network (NDSAN) busted a myth, revealing that there are families on its “waiting list” who are hoping to adopt babies with Down syndrome.

Key Takeaways:

• There is a myth that there are not enough adoptive families interested in adopting a child with Down syndrome. In reality, there is a registry of adoptive families who are immediately available and ready to adopt a child.

• Older data states that anywhere from 60-90% of babies diagnosed with Down syndrome in the womb are aborted.

• Certain pro-life laws have helped to save babies with Down syndrome from abortion.

The Details:

The NDSAN Facebook post read: “When a birth parent hears the term ‘waiting list,’ they think they have to wait to find an adoptive family for their child.” 

Nothing could be further from the truth. NDSAN clarified, “The NDSAN has a registry of adoptive families who are immediately available, approved, and ready to adopt a child with Down syndrome.” 

Yet, the abortion statistics for children with Down Syndrome are not comforting. Old data from 2012 estimated that between 60 and 90% of children diagnosed prenatally with Down syndrome are aborted. 

Both a 2022 study and a 2023 study (which had mostly the same authors) found that in states with laws protecting preborn babies from abortion after 20 weeks, the number of children born with Down syndrome increased more than in states without such laws.

Parents deserve updated information

NDSAN offers an alternative for parents who feel unable to care for a child with the medical needs that accompany a Down syndrome diagnosis.

NDSAN Director Stephanie Thompson understands the initial grief that birth families go through after a diagnosis because she herself welcomed a child with Down syndrome. While many parents learn their child’s diagnosis prenatally following genetic testing, her son Christopher was diagnosed after birth.

Recalling when she received the news, Thompson shared, “I remember feeling that he was not the same child that I was carrying through pregnancy.” 

Even when a child is not yet born or only just born, a thousand unknowns race through a parent’s mind as their most cherished hopes and expectations for their child’s life are called into question. Will my child be accepted? Will they go through all the normal experiences of childhood? Joining Boy Scouts? Riding a bike? Going to prom? Graduating? Getting a job? Having children?

In a YouTube video, Thompson noted that when families call NSDAN:

“You’re catching them at a time when they’re just in a lot of grief. And they’ve just been handed information that they know nothing about. So it’s my job, my responsibility to ensure that they have updated information.” 

Updated information is vital in a day and age where old prejudices about the challenges of raising a child with Down syndrome still abound even as life expectancy, inclusivity, effective therapies, athletic accomplishments, and employment options have never been greater. 

How can expectant parents make informed decisions about raising a child with Down syndrome without accurate information about both the challenges (including the possibilities of mild to moderate intellectual disability, heart issues, respiratory issues, hearing issues, and thyroid problems) and the possibilities and support systems already available to them? 

National Down Syndrome Adoption Network (NDSAN)

The Backstory:

The National Down Syndrome Adoption Network exists “to ensure that every child born with Down syndrome has the opportunity to grow up in a loving family.”

NDSAN is not an adoption agency. It is “a connection point between new/expectant families and adoptive families.”

It maintains a free registry of families who have completed their home study and are ready to adopt a child with Down syndrome. NDSAN also partners with Open Hearts for Orphans, which offers grants to families who adopt children with Down syndrome. 

NDSAN began in 1982, when a couple met a young girl with Down syndrome living in a children’s home. Told that the girl was “unadoptable,” they became advocates for her and for other children with Down syndrome who need forever families. 

That couple, Robin and David Steele, adopted a total of 10 children with special needs, including four children with Down syndrome. The organization they founded, NDSAN, partners with the Down Syndrome Association of Greater Cincinnati – which Robin Steele also helped to found – for logistical, financial, and administrative purposes. 

NDSAN maintains stories on its website from parents who decided to parent, parents who made an adoption plan, and parents who adopted a child with Down syndrome. The organization also offers brochures and information to help medical professionals deliver a Down syndrome diagnosis in a clear, compassionate, and hopeful way. 

Real-life Impact:

In the video, Thompson read an email from a mother who made an adoption plan for her child. The woman explained that she and the child’s father barely knew each other when they conceived, but they made the decision to co-parent. 

However, after they received the Down syndrome diagnosis, “All of a sudden, we weren’t just bringing home a cute bundle of joy.” Instead, “we were going to be bringing home a cute bundle of joy who would need so much more than we could ever provide.”

At 30 weeks pregnant, the expectant parents made an adoption plan “to ensure that our baby would have the best chance at being as high-functioning as possible.” 

The birth mother wrote:

“Some may think that placing a baby with special needs is easier than placing a typical child. I beg to differ.

Placing your baby in the arms of someone to love and cherish is the hardest thing anyone will ever do, but when you make the decision to place your child with special needs, you’re putting even more faith into their family; that they will advocate and fight for that child in every way that you would want.” 

At 39 weeks 6 days gestation, that mother held her baby in her arms for an all-too-brief time.

Even with the adoption plan in place, she naturally experienced conflicting feelings about what to do next. She explained, “Even with all the extra challenges I knew we would face, giving in to our love of her and having what they call a change of heart and deciding to parent her would have been the easy thing to do.”

She continued:

“The day after I came home from the hospital, I already missed her more than anything in this world. In moments where I try to tell myself I should have raised my baby, I stop myself and remember how good it was to see her family holding her themselves for the first time. They already loved her as much as I did.” 

She acknowledged, “I may be sad. I may wish she could have come at a different time in my life, where embracing her special needs would have been something I could do.” 

In a beautiful, difficult wrap-up, she concluded, “At the end of it all, I am proud I made the decision to give her the best life possible, even if that means watching her grow in the arms of someone else.”