By Leticia Velasquez
Editor’s note. Every January, prior to the March for Life, it is National Right to Life’s privilege to host a gathering of “Keep Infants with Down Syndrome” (KIDS) at its offices. The March gives families of children with Down syndrome a chance to gather and represent their children and all unborn babies with Down syndrome. They first meet at NRLC for sandwiches refreshments and then walk together in solidarity.
I was 39 in 2001 when I walked into my OB’s office for my first pregnancy exam for my sixth child. I had lost three to miscarriage and had spent my entire adult life in the pro-life movement. I was prepared to resist the pressure to undergo prenatal testing which moms over 35 so often undergo.
My daughter Christina was born five months later, with Down syndrome, and stunned the medical staff. What surprised me was the lack of support given to me. I was given a phone number for the county office of developmental services. No one offered medical advice, emotional counseling, and there was no lactation consultant available to me (babies with Down syndrome can have difficulty nursing).
I was, as far as the hospital was concerned, on my own. They never gave me a roommate, perhaps feeling it would make me depressed to see a typical baby. So I was alone. The nurse who wheeled me out of the hospital, expressed scorn when she learned I had refused prenatal screening, and tried to shame me, assuming that to test is to abort.
Fortunately I was blessed with wonderful friends, a prior history of La Leche League membership, a concerned parish priest, and experience with the culture of death.
Christina and I did just fine.
What soon became apparent to me is how unique my ultimately positive experience was. I spoke to many moms who felt isolated and pressured to not only have prenatal screening tests, but also to abort immediately after the results proved their child had trisomy 21 or the third copy of the 21st chromosome which is known as Down syndrome.
I tried to remedy the situation by giving my phone number to my OB office, as a resource to moms facing such results. I had been blessed to speak with Marge, mother of Krista, a gregarious 21 year old with Down syndrome, from the hospital who answered all my questions regarding my daughter’s future. My pastor had offered her number.
Not one doctor in a huge practice would even consider allowing me to help other moms in the same situation.
In 2006, I finally turned to the blossoming Internet where my blog, Cause of Our Joy helped me connect with other moms of children with Down syndrome. I wrote an article for a parenting magazine and the response was overwhelming; so many moms faced intense pressure to undergo prenatal testing and subsequent abortion, and we all felt unsupported and lonely.
One of these moms, Eileen Haupt, a pro-life activist from Vermont, struck up a conversation online about forming an organization which stood for the rights of unborn babies with Down syndrome, one of the most abortion vulnerable groups of unborn children. She came up with the name “Keep Infants with Down Syndrome” with the acronym KIDS.
Her neighbor, an artist, drew up the logo of a blue and yellow umbrella sheltering from the rain. We planned to meet at the Blogs for Life Conference prior to the March for Life, and walk down to the National Right to Life Headquarters in Washington DC where we will meet other pro-life activists.
We had several news outlets (including, of course, National Right to Life News) publish articles about KIDS since it was a movement within the pro-life movement which had not been widely known.
The day of the March in 2008, we met and thanked then Senator Sam Brownback (R-KS) who had read an article in the Wall Street Journal about the high rate of abortion for babies with Down syndrome who tested positive for Down syndrome (estimates range from 67%-82%). He introduced a bill to help educate pregnant moms of babies with Down syndrome about the positive aspects of life with an extra chromosome.
After meeting a couple dozen families with a member who had Down syndrome at the National Right to Life Headquarters, we met Congresswoman Cathy McMorris-Rodgers (R-WA) who had just had a son, Cole, with Down syndrome. She was preparing to initiate the Congressional Down Syndrome Caucus, which advocates for increased funding for research from the National Institutes of Health, among other issues.
The next year, KIDS was visited at National Right to Life Headquarters by Rep. McMorris-Rodgers, who has remained a faithful friend of KIDS. The Fraternal Order of Alhambra, a Catholic organization which supports individuals with disabilities, joined us in the March and we were then a regular feature of the March for Life. We’ve been joined by The Heritage Foundation, and The Lejeune Foundation, named for Dr Jerome Lejeune who discovered trisomy 21 in 1958, and spent the rest of his life advocating for the right of those with Down syndrome to be born.
Soon we at KIDS found friends on the Internet, Mary Kellet, from Prenatal Partners for Life, and Mike Sullivan a father from New Zealand who founded Saving Downs. We presented at Family Research Council, and Collaborated on a book of stories from moms and dads of kids with special needs entitled, ”
A Special Mother is Born, which has been translated in Spanish to Ha Nacido Una Madre Especial.
For a decade we at KIDS have been proclaiming from the housetops that life with Down syndrome is a blessing, not a curse, and with each group who joined the cause, we rejoiced that the message was reaching a larger and larger public.
Nothing gave our cause a greater boost than the CBS’s Program “Behind the Lens; Iceland’s Down Syndrome Dilemma” aired August of 2017. It ignited a national discussion about whether the sordid history of eugenics was reemerging in national efforts to eliminate those with Down syndrome from the population.
But perhaps the star of the pro-life push to save the lives of those diagnosed with trisomy 21 is self advocate Frank Stephens, whose moving testimony before Congress in which he said,
Sadly, across the world, a notion is being sold that maybe we don’t need research concerning Down syndrome. Some people say prenatal screens will identify Down syndrome in the womb and those pregnancies will just be terminated.
It’s hard for me to sit here and say those words.
I completely understand that the people pushing this particular “final solution” are saying that people like me should not exist. That view is deeply prejudice by an outdated idea of life with Down syndrome.
Seriously, I have a great life!
He received a standing ovation.
KIDS did not create this movement, but we are honored to have been a part of it for the past decade, and we will continue to march until every life is respected before birth, regardless of the number of chromosomes!