Doctor enters room, “I am sorry that all your hopes and dreams are over for your child.”
She continues to share with expectant parents, “Most of the time the chromosome comes from the mom, and because of your age, that is likely where it came from.”
I was at the hospital, holding the 1,000th Jack’s Basket in celebration of Baby K, welcoming him into the world and congratulating his parents on the birth of their precious son. My heart ached that this is what they heard from the doctor as it began their first steps on this journey. They deserved better and most importantly this baby deserved respect and dignity. Thankfully for this physician’s sake (whom states professional interest in genetic disorders), it was a Saturday morning, or my car would have been on auto drive to the clinic to ask some questions I had (respectfully, of course).
It’s 2018 people. This still is happening to new families that are receiving a diagnosis of Down syndrome for their child. Prenatally and at birth. Yet let me remind you, this diagnosis (discovered and named by Jerome Lejeune in 1959) is not a new one. And here I am, standing with Baby K’s parents, watching them beam with pride of their son, yet hearing them recite the words of a person speaking personal bias and pity on them. It’s as if this story would make more sense if it was 1959 (that’s 59 years ago for the record).
Imagine if this was your story. How would you respond? What feelings would stir in you? What fears and beliefs would start to cultivate in the quiet moments as you try to process a new, unexpected diagnosis like Down syndrome?
“I’m sorry all your hopes and dreams are over for your child.”
Why? Why are babies with Down syndrome discriminated against from the moment there is any indication that he/she may have an extra chromosome? Why do people feel that they can assumptively give an outlook of a child’s life, only to base their position on their own personal bias? Unfortunately, these biases and the power of words has caused many to start their journey with a fearful or negative perspective of the life and value of an individual with Down syndrome. Or worse yet, never meeting their baby.
Why is the most dangerous place for a baby with Down syndrome their mother’s womb? Count me off base here, but I would assume that anyone that specializes in genetic conditions (prefer that word over disorders), would have some knowledge or experience with individuals living with Down syndrome, along with up-to-date resources and avenues of support to connect new families, before sharing their assumptions as if they are facts. Oh wait, I shouldn’t assume…that hasn’t proven well for our community. Especially in the case of unborn babies with Down syndrome. See blog post on how those assumptions impact decisions made in Iceland.
As I shared at the 2nd Annual Jack’s Basket Fundraiser in September, it’s my belief that we live in a society that has a functional definition of humanity. That our value and worth come from our abilities and accomplishments. Yet in our hearts, we know that not to be true.
The power of our words and assumptions, has led to perceptions…ultimately clouding our view of others. We’ve let labels, and diagnoses, and generalizations blur our vision of seeing PEOPLE…that were divinely created with a purpose.
Sadly, our community has been directly impacted by this definition of humanity because the population of people living with Down syndrome is decreasing by 30% as a result of prenatal screening for a positive test result of Down syndrome.
On November 4th, it was my 1-year anniversary of being hired as Jack’s Basket’s first employee and I was given the title of Executive Director to add to the existing one, Founder. Never in my mind would I have imagined this would be our story. Never did I think I would be leading a (fast growing) nonprofit celebrating babies with Down syndrome. It wasn't my intention to make this work my job, but the above reality of what families are experiencing, along with a sweet baby boy that changed my heart and passion, mixed with my “feisty gets things done’ mindset, and belief in a God that splits seas, moves mountains, and the power to change perspectives…you’ve got the Jack’s Basket Executive Director. And, we’re getting stuff done.
Not only do we celebrate these precious babies with a Jack’s Basket, we are changing the way the story starts from when the diagnosis is given. Our journal publication in the American Academy of Pediatrics titled, When Bad News Isn’t Necessarily Bad, Recognizing Provider Bias When Sharing Unexpected News is making a huge impact in the medical community. An opportunity to recognize bias and bring a voice from the family’s perspective on how that impact is affecting our community and has started conversations, reflections, and change. You can read the article and view our video abstract here. The Jack’s Basket medical committee members (which consists of dedicated and passionate health care providers) gathers frequently to talk about how this paradigm can shift.
I truly and honestly desire to work myself out of a job.
“What if every child that was uniquely created with Down syndrome was welcomed and celebrated? What if every family received a message of hope and every family congratulated? What if every diagnosis was delivered with the intention to honor the life of a child?”
Imagine the impact this can have on our babies and their families, our communities, and the world.
I do believe we can do this.
If it’s through Jack’s Basket or Jake’s, a local Down syndrome organization, or an international one, big or small, it needs to be happening. And while I’m on that topic…this basket of hope has never been about Jack, although he’s the inspiration behind this work, it’s about people and what they deserve to experience.
It’s so the “I am sorry all your dreams for your child are over” comments stop happening.
It’s so that families don’t leave a clinic or a hospital without resources, support, or an opportunity to connect with another parent.
It’s so families don’t feel like they need to walk this journey alone.
If we care about these babies and their families, we will join efforts and make this happen.
This is the very reason we need to continue to speak our truth. To shout the worth of these babies.
Because our babies have hopes and dreams and we won’t let the assumptions of others define how that looks and/or if that happens. Because their story matters.
Thanks for believing in this mission. Thank you for believing in this work. Let’s go celebrate some babies and change the world.
Love, your Jack’s Basket Executive Director
In October 2018 Jack’s Basket celebrated their 1,000th baby. 1,000 families congratulated. 1,000 stories given the gift of hope. If you know of a baby diagnosed with Down syndrome, please request a Jack’s Basket for them at www.jacksbasket.org