Shoulders

shoulders

“If I stand tall, I’m standing on the shoulders of those who have gone before us.”

-African Proverb

I write this post with tears streaming down my cheeks…a grieving of injustices and tragically misguided understanding of the value of life for those with Down syndrome. And as I reflect on the future I expect to give my daughter, I also weep from the overflow of gratefulness for those whose shoulders I stand on. I pray that my participation in history will create a better world for future generations of children living with Down syndrome.

History is fraught with evil. Yet, in its time, evil is often disguised as ‘an educated view’ or the ‘moral choice’. Only later, after much suffering, is evil exposed and those who choose NOT TO DO NOTHING rewrite the story for future generations. The history of Down syndrome is not void of such tragic deceptions. However, its history is neither void of ordinary people, who took the pen out of evil’s grip and began to write a better story.

Elimination preceded discrimination. In early Spartan days, infants deemed to have a disability were barbarically thrown off cliffs in an effort to improve their race by the elimination of less-desireable genetics. A similar Eugenics movement was birthed in America during the early 1900’s and children with Down syndrome were being killed or sexually and physically abused through compulsory, federally funded sterilization. These atrocities in America, gave inspiration to Hitler’s ‘life unworthy of life’ indoctrination and early genocide of 200,000 people with disabilities using lethal injections, starvation or gas chambers. Most of the victims had Down syndrome. Little girls, no different than my daughter, would be deemed unworthy of life, murdered shortly after birth or grossly abused, merely for being differently-abled.

Although the Eugenics movement lost momentum, the prevalence of asylums and the institutionalization of the mentally disabled was the acceptable norm. Children with Down syndrome were immediately removed from new mothers and in some cases, Father and Doctors would deceive the mothers by telling her the child had died, when in fact, the child had been abandoned to an asylum. Even the most prestigious of institutions were draconian at best. Once, Senator Robert Kennedy visited a particularly sought after institution, Willowbrook, and referred to it as a ‘snake pit’. Medical experimentation, unsanitary conditions, isolation, prison-like restraints, gross abuse and unmarked graves characterized these facilities. In the mid 60’s the norms of institutionalizing the mentally ‘retarded’ began to shift; sadly,  it would take until the mid-1980’s for this horrific chapter to close.

During the early 60’s, a number of families refused to have their children abandoned to ‘snake pits’. These families chose to raise their little ones with Down syndrome themselves in the hope they could offer their child a better future than an asylum offered. Families who chose this path were explicitly denied the support of government, medical or educational resources to assist with the care of their child. In a time when accurate information about Down syndrome was scarce, resources were non-existent and discrimination was still high, these families refused to believe their children were unfit to be raised at home. Instead, many families began support groups in the basements of churches, community facilities and homes. Out of this emboldened group of people, The ARC was born-a grassroots movement to change perceptions of children with Down syndrome.

And then, in 1960, a woman named Kay McGee gave birth to a daughter with Down syndrome, Tricia. Instead of allowing her daughter to be taken, her and her husband Marty took their daughter home against the advice of doctors and embarked into a world with little to no support. Kay began to network with others who had also deferred institutional care for their children and on the shoulders of these brave families, she pioneered the National Association for Down Syndrome. Kay rallied people together for the cause and connected professionals with parents to close the information gap surrounding Ds and she coordinated therapeutic interventions for children with Ds. Kay would visit hospitals to plead with the staff to notify her when children were born with the syndrome so that she could reach out to the family and provide the support she had never had herself. Today, NADS is still transforming the story.

Up until 1984, medical practitioners could refuse life-saving surgeries for children with Down syndrome; instead, many doctors would mandate starvation as a method to do away with these little ones plagued by health complications! This story is shared on the NADS website:

In 1982, a Bloomington, Indiana baby with Down syndrome, known as Baby Doe, was born with esophageal atresia. Because the baby had Down syndrome, the parents were encouraged by their doctor not to give permission to operate. When word of the situation became public, a dozen families came forward and offered to adopt the baby. The offers were refused. The parents, their doctors, and the Supreme Court of Indiana said they had the right to starve the child to death. The baby died seven days after birth, before the U.S. Supreme Court could hear an appeal to the Indiana decision. This case and that of Baby Jane Doe in New York outraged advocates, who worked tirelessly to get the U.S. Congress to pass legislation in 1984 prohibiting the withholding of “medically indicated” treatment from any child born with a disability.

I was born in 1982 so I can’t help but sit here, my fingers trembling at the keys of my computer, my eyes misty and my daughter within me is tracing my right rib cage with her toes in an ungraceful fashion. Russ and I have the immense privilege to be served by a leading pediatric cardiology facility and team, whose patients are often children with Down syndrome. There is no trace of discrimination among the team of professionals and it is evident that their aim is to provide our daughter with the most high-tech, effective and life-giving operation that is within their power to give. Yet, in MY LIFETIME, this was not the case for so many like our little one.

The tireless voices…the brave actions…the relentless forward movement of this story, by those who chose not to sit in silence while evil prevailed, but who chose to confront the evil of their time- these are the men and women on whose shoulders I stand. Pluto and Aristotle spoke out to give publicity to ‘feeble’ infants rather than the shameful elimination of them in ancient Greece. The Kennedy brothers used their power to reveal the atrocious conditions of institutions and enable research for Down syndrome. Countless journalists and doctors refused to be silent when society had accepted evil as a norm. Families chose not to allow institutional care to swallow their children. The unnamed fathers and mothers who reached out and offered counsel and support to other families with Ds. Kay McGee and her successors at NADS, who continue to fight for equality, care and the celebration of children with Down syndrome. The advocates who didn’t sit still when Baby Doe was being eliminated and changed the law in favour of a better story. And many others who have influenced better care, education and life for children with Dd. These are just a few mentions in a very tall pyramid of shoulders that I stand on.

The day after we received our daughter’s likely Diagnosis, I unwrapped a beautifully assembled wicker basket we had been given by our genetic counsellor. It was Beau’s Basket- a young boy with Ds whose mother instigated the creation and delivery of these stunning gifts in an effort to influence the tone of a Ds diagnosis with as much celebration and joy as can be communicated without words. Inside the basket was a hand-crocheted pink baby blanket, a stuffed monkey (with a name tag- ‘Ollie’- heart-warming because our dog’s name is Ole), a few toys, blankets and a beautiful handmade beanie/toque. There were resources galore! Handouts, books, notes of encouragement and a photo of Beau and his beautiful family. There was a card in the basket with a number to call for the support of a community of people who had walked this road before us. Whose shoulders we could stand on.

When I called the number on the card, one of the most friendly voices I’d ever heard answered my call. Her name is Susan. I am sure I just rambled out the initial facts of our story in an attempt to explain my call. She was the first person I spoke to about our baby’s diagnosis, aside from my parents and the staff at the hospital. Her first response was one of celebration, “Congratulations!” She put me at ease by explaining her own story of having a 15-year-old daughter, who was born with Ds and whose diagnosis they found out at her birth. That Saturday, only 3 days following our diagnosis, her and her husband, Tony, invited us to their home where a couple other families with Ds were stopping in to meet us as well.

I will never forget walking up to the door of their home. I hadn’t met a child with Ds for as long as I could remember and I was nervous because I feared my face would betray me and give away the disappointment I would feel in realizing what my own daughter would be like. I won’t share her name to protect her, but when the door opened, a charming, welcoming and energetic young girl met us with oodles of enthusiasm. I was in fabulous shock. This was not the picture I’d had in my mind of what Ds would look like. We met two other children that day, a two-year-old boy and an adolescent boy- both equally disturbed the preconceived ideas I held for what our future would look like. These three families made us feel like their family. They shared their stories and offered encouragement as we were initiated into this tribe. When the door closed behind us and we made our way back to our vehicle, our hearts were light. I remember feeling speechless by the experience, these kids are amazing I thought. We had experienced such love at their home.

In just a short visit, we had learned that the bright 15-year-old young lady who had met us at the door, was attending general-ed high school and had learned to sing in key (a difficult feat for many kids with Ds). She confidently talks, twirls and communicates with a bursting desire to share her stories. Her mother, Susan, founded the Down Syndrome Connections North West non-profit, which connects families with Ds in our area. She pioneered this group with another Mom and their aim is to create a touch-point of connection for families like ours within the first year! One of the most memorable things she told me that first day, was that the story has come a long way in a short time and that children being born with Ds today, have far greater access to developmental therapy, integrated education and future opportunities than the past generation. What a different story we get to live in today, because of the ordinary warriors whose shoulders we stand on. Warriors like Alaina Stevenson, whose baskets in her sons name, have become the positive narrators of a story which families, like us, find themselves in. Although she treats me as a peer, Susan is a giant to me. She has allowed me to climb up onto her shoulders and see a greater future for my daughter than I ever thought possible.

I am hopeful, that my shoulders will one day be a starting point for another and that I can tell a story which creates a stronger tomorrow- because the story of Ds still needs people, who will not stay silent when evil prevails. I am so grateful for those who have done this for my little girl. Thank you, thank you, thank you.

Here is one such woman, fierce and brave, speaking out and confronting the new wave of modern day eugenics, enabled by Non-Invasive Prenatal Testing, before the United Nations.

Rachel

References:
http://www.nads.org/about-us/history-of-nads/
http://www.cdadc.com/ds/a-history-of-kathryn-mcgee-and-the-founding-of-mdc-and-ndsc.html
http://www.healthcaredailyonline.com/world-down-syndrome-day/
https://www.globaldownsyndrome.org/about-down-syndrome/history-of-down-syndrome/down-syndrome-human-and-civil-rights-timeline/
https://www.thedailybeast.com/living-with-disability-in-the-dark-ages
https://www.thearc.org/who-we-are
http://www.dsconnectionsnw.org/index.html
http://downsyndromeuprising.blogspot.com/2013/07/a-brief-history-of-down-syndrome-part-7.html

 

Results

As promised, Tanya called me back on Tuesday. Her call came late in the afternoon and Russ was home. I handed Madeleine to him as I glanced at the familiar number on my phone and I perched on the couch, looking out the window. I half wished I’d grabbed our calendar to remove the guesswork from my expectation of a re-scheduling of the blood test.

In the very short time I’d had with Tanya, I already appreciated her clear and informative approach to genetic counselling. It’s so rewarding to see someone so well suited for their role. Her voice was friendly and we went through the standard niceties of how are you, etc. Her tone shifted ever so slightly and she asked, “Is this a good time, do you have a few minutes to talk?” The answer to her question came out of my mouth, as my heart suddenly raised a red flag and began to wave it in the pit of my stomach. “Yes, now’s a great time….Russ is home.”

I tried to compensate for my gut reaction by focusing the conversation on the reschedule. “Are we going to have to reschedule?” I asked, suddenly hopeful the answer was yes.

“Actually, the lab has sent the results, and the reason they are late is that they wanted to verify and be sure of their findings.” Again, my voice carried a tone of confidence as I heard myself respond, “Oh, okay…..they have actual results?” Inside, my truest self knew and the red flag no longer waived, it just stood, certain of the news that was about to be heard.

The bliss of not knowing suddenly shattered as Tanya gently, yet clearly explained, “The results are showing a high risk of Down Syndrome.”

There it was. The bliss was gone and the words Down Syndrome took it’s place, causing my mind to grasp for some level of certainty. I suddenly became conscious that Russ was holding Madeleine and listening to my side of the conversation. I don’t know why that silly voice of mine continued to carry on the conversation as though there was nothing noteworthy happening…..or perhaps it conveyed a fore-knowledge of the news. Almost cheerfully, I said, “Oh, alright. So now what?”

I could hear Tanya’s slight surprise at my tone and acceptance of the news. She didn’t miss a beat though, “We would like to have you come back if that’s possible because we will do another scan to determine a more accurate level of risk for Down Syndrome. Could you come in tomorrow?”

When I hung up the phone, I could feel a numbing sensation washing over me. Russ looked at me inquisitively and all I knew to say was, “It’s not good hun. It’s Down syndrome.” There was a nonsensical thought that circled my mind as I looked at Russ absorbing the news. Am I the cause of this? It’s my fault he now has to face this. What is he thinking of me right now?

Of course, those thoughts were straight from the destroyer of all good things. They were planted to bring shame and drive a wedge between me and Russ. But Russ’s gentle and tender love immediately removed those fears and silenced the enemies voice. We sat together, I cried and we just let the likely possibility sink in. Our baby has Down syndrome.

Tests

 

We told our families soon after we knew we were expecting and got the usual jokes and prods like, “Wow….not wasting any time eh!?” We laughed with them in agreement, because the truth is- we don’t have time to waste. I’ve never had a sense of my ‘biological clock’ ticking…although we both knew if we wanted a little crew of kiddos, we couldn’t put too many months between pregnancies.

At my 12 week ultrasound, I asked the technician if the scan included a nuchal translucency (NT) test. This testing is an early way to detect chromosomal abnormalities in the baby (by measuring the fluid at the neck of the baby) and it had been a standard part of my prenatal testing during my first pregnancy in Canada. She informed me that the scan didn’t include the test.

Shortly after, we sat with the OB who reported that everything in the scan was looking healthy and normal. Her eyes were very kind and communicated the shared sense of thrill that a perfect new life brings. I held my ultrasound photos in one hand- proof that there was, in fact, a little human growing within me! It was all great news and I allowed it to put my unspoken, nearly unconscious concerns to rest. I questioned the absence of the NT testing and the OB suggested that we consider NIPT testing- a relatively new and far more accurate blood test which could be done at any time during my pregnancy. The costs for the test would not likely be covered by our health insurance and I would have to go to Spokane to have it done. I didn’t expect we would opt in, but when I looked up at Russ, who was shifting back and forth with Madeleine in his arms, I saw a look on his face that I’ve come to recognize as a decisive, Spirit-led, decision-making look. He returned his eyes to the Doctor and said, “We would like that test, I think it would be good to know.” Although I was surprised, I agreed wholeheartedly and the test was arranged.

I arrived at Sacred Heart’s Maternal Fetal Medicine clinic on January 4th for a Non-invasive Prenatal Test (NIPT). I was 14 weeks pregnant and only just starting to show evidence of a bump. A friend had come to help me with Madeleine. As we sat in the waiting room, I looked at the other pregnant women and wondered what circumstance had brought them there. My mind wandered into that query and I could only imagine their worse case scenarios. I, on the other hand, expected a one-time visit and confirmation that our little one was developing perfectly- just as Madeleine had.
My first appointment was with a Genetic Counselor named Tanya. She graciously explained the testing, it’s accuracy and then proceeded to educate me about possible chromosomal abnormalities that could be detected. I had sat through this very same spiel with a dear friend, only a couple years prior, and it was like a strange flashback. The graphs and tables of age-related risk for Trisomy 13, 18 and 21(Down Syndrome) were initially intimidating. The fluky possibility that a particular chromosome could triplicate itself, instead of duplicate, seemed so random. When Tanya explained that my risk was less than 1%, I lent into my optimistic nature and saw only the 99.5% chance that my baby would be typical.

Trisomy 21 Karyotype Female - Copy
The blood draw and ultrasound were uneventful- although I love every chance to see my baby swimming and bopping around in my tummy in real time! The Doctor then reviewed the ultrasound with me, assuring me (just as I had expected) that everything looked very normal. I asked him if the back of the neck had been measured and he explained that although I was a few days outside of the ideal range of pregnancy for that test (10-14 weeks), the neck was measuring normally. If there were any reason for doubt on my way into the clinic, it had all evaporated by the time I left. The staff had each been so personable and caring, and yet, I never intended to see them again. I would get the blood test results over the phone in 7-10 days as a final confirmation.
The next week I called Tanya to ask if my results had arrived. She had asked me to prompt her on day 7, so I did. The results weren’t in and she told me to call back the next day, Friday, when the tests would most definitely be back. I wasn’t feeling nervous about the results, so I waited until the latter part of the day to call and ended up leaving voice messages requesting the results. My call was not returned and the day was nearly done, so I knew I wasn’t going to have the results until Monday. Sure enough, on Monday I received a call from Tanya, apologizing for the wait. She said the results still had not arrived and that the delay was usually a precursor for a “non-result”. This would mean I’d have to return to Spokane and have a second blood draw, as not enough genetic material was collected the first time. She was going to follow up with the lab to confirm this was the case, but she told me not to worry…and apologized that I would likely have to drive back to Spokane.

Taking Madeleine and driving back to Spokane in the middle of winter was not on my bucket list for 2018. I didn’t know then, that the following 24 hours would change the rest of my life altogether.

Rachel