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When the doctors came to Nicola Bailey with sad faces to give her the news, what bothered her most of all was that she thought there was nothing to be sad about.
Based on their gloomy faces and subdued tones of voice, their lead-in that they were “really sorry to have to tell you this …”, Nicola feared for a moment that her newborn twins hadn’t made it. The young English mother feared the worst, because she believed her children’s lives were inherently valuable, independent of whether or not they were “normal.”
For the doctors, however, communicating the diagnosis to her was almost worse than giving her the news of an early death: Harper, born 38 minutes before her sister Quinn, was that one case in a million of Down syndrome affecting just one of the siblings in a twin pregnancy.
For the doctors, the baby was a statistic; a rare, harmful coincidence. For Nicola and her husband, however, their daughter with Down syndrome was a life to be celebrated.
Interviewed by the website Tyla, they said they felt “robbed of being able to celebrate Harper being born.”
Certainly, a diagnosis of Down syndrome can be hard to grapple with, especially if it’s unexpected, but what illness or condition doesn’t cause worry? Unfortunately, the reactions of those around us, such as doctors and family members, often don’t help. On the contrary, as Nicola tells Tyla,
“It is very common with a diagnosis of Down syndrome to go through grieving. With all the negativity, it made me not want to bond with her. You’re made to feel as though their life is valued less.”
Instead, Nicola wished the doctors would have congratulated her and offered words of comfort and strength, knowing that the newborn babies were in otherwise good health, she says. Although she understood the doctors’ desire to tell her up front the information that they considered most important, she would have preferred a more positive approach.
“If they’d done it like that then it would have been less traumatic. But the way they deliver the news, you think your child is dying—it’s a horrible way of receiving information,” she laments in the Tyla interview.
Based on her experience, Nicola wanted to help other mothers who, knowing her story, have flooded her with messages. So many women have similar stories and experiences. She decided to start an Instagram account and a blog where she can show her real life up close, especially the fact that her family is “normal” and happy, contrary to all diagnoses and expectations.
Nicola proposes a new, positive way of accepting Down syndrome or any genetic condition or disability, which can be diagnosed with prenatal screening, but which often is only identified at birth. She knows how the diagnosis feels, and speaks sincerely to those who have found themselves in the same situation:
“I had moments after she was born where I grieved. I feel awful about that now because I remember looking at her and thinking, ‘I don’t know what to do with you, am I going to be who you need me to be?'”
Her feelings reveal that, in many cases, behind the fear of an “imperfect” baby hides the fear every mother feels about her own imperfections. These fears can be aggravated by the diagnosis of an illness, if the mother isn’t given the right support.
Nicola—with photo after photo, smile after smile—reminds all parents that they are enough. She wants parents to know that the diagnosis is not an impediment to love or happiness, but rather is part of their children and makes them unique and special, like any other little one:
“If you take the Down syndrome out of Harper, she isn’t Harper anymore … She sees the world the way she does because of who she is. It is who she is meant to be.”
Today the twins are two years old and their mother has dedicated a beautiful message to Harper on Instagram:
“I know when we received your diagnosis two years ago that I cried, I know I felt sad and even disappointed at what I thought I had lost, but you my sweet girls showed me that there was nothing to be sad about, you show me how to be strong, how to enjoy the simple things, you have taught me that life not a race, and how savor every small moment and celebration all our victories however small they might be. I know now I can not change our beginning but we can start where we are right now and change our ending. I was born to be your mother. I may have given life to you but in all honesty you have helped me find mine so thank you my beautiful for just being you.”
Nicola reminds us that each of us is “different” in some way, and this is part of the beauty of being human. We all run the risk of an unhappy life, with ups and downs. Yet we know that sadness is only one chapter of our stories, and does not make our life any less beautiful or worth living.
Read more:
9 People with Down syndrome who are changing the world
Read more:
Dad with Down syndrome inspires his son — and teaches us all to re-examine our assumptions
