One of the most compassionate missions in the United States

National Down Syndrome Adoption Network logoDid you know that there is a national registry of families wanting to adopt a child with Down syndrome? The registry is maintained by the National Down Syndrome Adoption Network (NDSAN), which has one of the most compassionate missions in the United States.

In the 1970’s, Janet Marchese was at her home in New York state when the phone rang. A baby was born with Down syndrome at a local hospital. Janet was asked if she could care for the child “until there was room at an institution.” When space became available, they came for the baby, but Janet would not let him go. Janet was asked to take more children with Down syndrome. To meet the need, she committed to starting an adoption network.

Not too long afterwards, another couple met a young girl with Down syndrome living at a group home in the greater Cincinnati area. She likely would have remained there for the rest of her life. Instead, the couple chose to adopt her. Robin Steele and her husband would go on to adopt nine more children, and she would take over the important work of the adoption registry.

The adoption registry was (and continues to be) a program sponsored and maintained by the Down Syndrome Association of Greater Cincinnati (DSAGC). In 1992, Stephanie Thompson began work for the DSAGC and then, in 2010, she transitioned to serve as the assistant director for the NDSAN.

Under the steadfast leadership of Robin, dozens of families were matched with adoptive children with Down syndrome. With the addition of Stephanie, the NDSAN has experienced unprecedented growth:

  • Historically, the NDSAN would receive around 40 calls a year to place a child for adoption; in 2012, there were 105 calls.
  • In 2012, the NDSAN averaged less than 9 calls per month for placing a child with Down syndrome for adoption; in January 2013, 14 calls were received.
  • In March 2013, 18 new families joined the registry–the single highest number for any month in the NDSAN’s 30 year history.

While these numbers are impressive, what’s even more impressive is to appreciate the amount of work that must take place for a successful adoption.

The NDSAN handles 1,000’s of calls on a 24-hour, 7-day a week basis, because it is truly a national mission. Based in Cincinnati, calls begin in the normal waking business hours of the Eastern time zone, but then there is the “second shift” that happens late into the evening for those families on the West coast.

Further, while there are typically 200 families on the adoption registry, more are always needed. This is because families often have preferences on both sides of the adoption, such as the child’s age and the adoptive parents’ age, the child’s location and the adoptive family’s state of residence.

This is why the NDSAN hopes to make clear that it maintains a registry, not a “waiting list.” That phrase can have unintended, negative associations. For an expectant mother, a “waiting list” may suggest she would have to wait to place her child. For families interested in adopting, a “waiting list” may suggest they have to get in line to wait for a child, when that is not the case.

To increase awareness of its mission, the NDSAN has stepped up its on-line presence. For this year’s World Down Syndrome Day, the NDSAN shared families’ stories of their adoptions on its Facebook page. Stephanie made a request of their families and so many responded that stories were posted every 30 minutes from 9 am to 11 pm. Reading any of these stories is enough to convince you of the truth of this post’s headline. I encourage you to visit the NDSAN’s Facebook page to see for yourself.

NDSAN’s growth is impressive, and could not be more timely. With the advances in prenatal testing, more women than ever are receiving their diagnosis of Down syndrome prenatally. Recommendations have been made for providers to discuss all options when delivering a diagnosis. The option of adoption, however, is almost never presented with a diagnosis. Hopefully, the growth in the NDSAN’s marketing efforts will change that.

The NDSAN is a recognized approved resource by the National Society for Genetic Counselors (NSGC) in its guidelines on delivering a Down syndrome diagnosis and is included in the list of Prenatal Resources on this site. Here’s to there being that many more heart-warming stories to share on next year’s World Down Syndrome Day because of the good work of the NDSAN, one of the most compassionate missions in the United States.

The NDSAN logo is used for identification purposes only and does not to imply any endorsement of this post. 

What was your experience? Were you informed of the availability of adoption when you received your child’s Down syndrome diagnosis?


  1. Lucie Olivova says:

    I live in Hawaii. At my baby’s birth I was notified that my baby boy has DS. He was born June 24 2013. I’m doing research on possibly having him Adopted. Could you help us?

  2. Andelene Horsford says:

    My sweet angel, Colleen, was born on 7 March 1991. She was Down Syndrome, and had severe health problems since birth.

    When she was born, I had no idea what the name “Down Syndrome” meant. But 22 years later, I know it means “Unconditional Love”! She taught me and my 2 older children so much about love, caring, acceptance and being grateful for the little blessings in life. Twice in her life the Lord used her to save 2 women who were ready to commit suicide! And she did not even realize what was happening. Her pure love changed their lives forever!

    Colleen passed away on the 12 th July this year, in ICU, due to multiple organ failure. A huge part of my heart died with her. She was the single most precious blessing in my life!

    • Hello,…my name is Erin and I lost my daughter with down’s due to heart / lung problems….its been 14 years, I talk about her everyday. I miss her so much, I would love to adopt a little girl with down’s. I have so much love in my heart for a baby. By any chance would you be willing to tell me the cost in doing so ? (I know its a very personal questions , and I would understand if you don’t want to disuss the cost). I’m not rich by any means ..I work a full time job and my husband works as well..We would do all we can to be able to adopt a baby girl…I dont think it’s fair you have to have so much money to adopt…my love is free…There’s no price for that.
      thank you for your time.

      • Erin–I would recommend you contact the NDSAN. Anything I would offer would be a guess, but they counsel adoptive parents every week and would have the more current and accurate information on the cost of adopting.

    • Doug Frank says:

      When our firstborn Nellie was born 17 yrs ago with Down (in Cincinnati), a social worker informed us about the ‘waiting list of 5000 families’ the morning after the birth, in case we did not want to keep her. My wife became like a momma bear with her teeth and claws out…and the social worker escaped with her life…. Nellie is a priceless treasure and delight to her parents and her two younger brothers.

      • Doug–thanks for sharing your experience. No doubt the NDSAN being headquartered in Cincinnati attributed to it being top-of-mind for the social worker. NDSAN is sensitive to expectant and birth parents values and while the social worker may have suggested you may not have wanted to keep her, that is not the approach taken by NDSAN.


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