I asked if it was normal to for expecting mothers to be called into the office the next day to discuss the results of the ultrasound. I should have known that it wasn't. I should have known that when the technician kept asking me to change positions and when I got a call from the genetics office before I even got home from my appointment that our lives were beginning to take a turn.
In the waiting room of the genetics counselor the next day I wished my husband could be with me; but they were so anxious to meet as soon as possible that he couldn't get off work. There in that small, nondescript office she explained measurements and soft markers, she went over the worst-case scenarios and the most likely outcome, she offered tissues and next steps. In a gentle, nonjudgmental way, she told me that we could discuss termination if I chose to, and the look on my face and firm “no” ended that discussion with no further comments. I left that day with a crash course in chromosomes, a kit for the NIPT blood work, and a million questions. A week later I returned, husband beside me, for her to repeat the exact same information again; and following our meeting, she came with us to another ultrasound, introduced us to our new high-risk OB-GYN and gave us a book and a hug.
She didn't know, before meeting us, that this baby was desperately wanted and eagerly anticipated, planned for, and already loved. She didn't know that we had the unwavering support of our family and friends who would be tremendous assets to us in this new journey. What if we didn't? What if her voice, her words, and her attitude had shaped our perception of our child and had steered us toward a decision about whether to continue our pregnancy? What if she had described only grim possibilities, a bleak outlook and spoke only of the negative ways that this could possibly affect our lives? What if she assumed that we didn't believe that all life has value regardless of its diagnosis and what that could entail? She didn't know, when she called to confirm the results of the NIPT showed more than a 90% chance of Down syndrome, that while I had a few tears after hanging up the phone--not because I felt any differently towards this baby but because the world can be unkind to those who are different--I immediately began searching tennis lessons for kids with special needs; I wouldn't give up on seeing my kids play with their dad.
Looking back now, with my almost-two-year-old, I wonder how many parents should have been met with the objectivity and compassion we received--would there have been fewer tears shed, less time spent grieving and worrying, different decisions made? In sharing our diagnosis story with other parents I've called us "lucky" because we had a relatively good experience receiving this life-altering news; but it shouldn't take luck to get factual, current and correct information from a medical professional. When I hear about parents being told only about the limitations to expect for their child, I feel a mix of anger, frustration and sadness--every child has limitless potential! To think that there are doctors, nurses, counselors--people we trust to guide us through our pregnancies--painting a bleak picture of a child's future simply because of a lack of information or interest, even a disregard for human life that's anything other than "typical..." it's sad, it's scary and it motivates me.
I’m motivated to share our life with Milo in the hope that seeing how "typical" he is will help change attitudes, minds and hearts. I hope that as you get to know Milo and follow his journey you see him first and not his diagnosis--the boy we call Critter who loves music, is learning sign language as quickly as we can teach it, is endlessly curious and stubborn, loves to hide things and sneak up on people, is always hungry and gives the best hugs. His 47 chromosomes don't define him but we love each and every one. Several times I have reminded his pediatrician, our OB-GYN and the same genetics counselor who delivered our diagnosis to think of us when they meet a family new to the Down syndrome community; to share Milo's story and let them know that they are being initiated into the coolest club I've ever joined.
Our story is a good one but it shouldn't be an anomaly. The Down Syndrome Diagnosis Network (DSDN) is working hard to change that by educating doctors, geneticists and others involved in guiding families through the diagnosis stage. In addition to advocating for medical professionals to deliver unbiased, family-centered and well-informed diagnoses, they also do a remarkable job of connecting parents to help support each other, share resources, and advocate for our kids. The friendships I've made through DSDN have offered me support that can only come from mothers who share the same hopes and concerns for their children. We share each other’s joys and lift each other up from all over the country.
DSDN has over 80 local partnerships where we provide our materials and resources to organizations across the country. Did you know that you or your organization can request DSDN brochure and leaflets? DSDN is happy to send you or your local org materials to distribute to your local OB-GYN, pediatrician, DDD provider or therapist's office. Go here to request: http://www.dsdiagnosisnetwork.org/materialrequestsforparents
Sharing stories like Milo's will help us achieve a world where every Down syndrome diagnosis is delivered with objectivity, compassion, and accurate medical information. It's beyond time to make sure that every parent is equipped with the knowledge and connections they need to help their child thrive.