Did 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?