Last week I wrote about and hosted an essay on the Pro-Information coalition in the world of Down Syndrome Prenatal Testing policy.
This week, I want to share our diagnosis story as part of Never Alone, a pro-information campaign from Lettercase to make sure that people who are receiving diagnoses not only have the best information (and they have a booklet to serve that end), but also are not alone.
If you are a parent, please consider going there and sharing your diagnosis story. If you are a medical provider, go find out more. If you can donate to support the production and distribution of information booklets, it’s a good cause.
Here’s our story.
We had a post-natal diagnosis, but the lessons I have learned from it are relevant to the complex and ongoing discussion of prenatal diagnoses.
About five minutes after my son was born, my son’s eye was having some difficulty opening (because being born is hard) and I asked Michelle, the nurse-midwife, if there was anything wrong with it.
“No,” she replied, “but did you have any genetic testing done?”
I was, at the time, too ignorant to know what was coming next. I answered, “no?”
This was true, not because of any philosophical plan, but because for various reasons we didn’t know my wife was pregnant until we had moved past a lot of the test dates. The ultrasounds showed no troubles, so on we went through the months.
Michelle looked up at me and I now know what the expression on her face meant. Doctors and people like Michelle – not a doctor, but with a lot of knowledge and independence – have to deliver bad news all the time, but only a few are really good at it. I have no idea how someone learns to do what Michelle did next, to say a phrase that changes everyone’s life, forever, especially as she could have passed the buck to our pediatrician or another doctor.
In this moment that should have been filled with elation, our minds turned to institutionalization and death, so powerful were the words “Down syndrome” and their negative connotation.
Through classes and talking to doctors, Shannon and I both knew how things were supposed to go. After the baby is born, they clean him and wrap him and weigh him and make sure there’s no danger, then they give him to his mother. There are so many pictures and images of that smiling perfect moment, exhausted, the new parent and new person cling to each other. The baby, having taken his first breath, issues his first wail, a protest at having been extricated from the perfect home that is the womb. Nico was silent. Nico was not being placed on Shannon, and she sensed something was wrong.
She cried, “Where is my baby? Is he ok?” I mumbled something. “Is he ok?” she repeated. “He’s fine,” I said, “But Michelle thinks he has Down syndrome.” The words tumbled out of my mouth in a painful rush.
We have a picture. I’m not posting it. We don’t look happy. I look at it sometimes to remember those moments though.
|Nico and my finger, day 3|
Then our community of friends and family, who had spent the hours since my late-night post and the following morning learning about Down syndrome, kicked into gear. In those first bitter hours, among the more trivial of my dark thoughts was that the man we had asked to be Nico’s godfather wouldn’t want to be involved with Down syndrome. I thought that I should let him off the hook. I felt ashamed of my son, of myself, of my thoughts. I wanted to hide. But our friends … including Nico’s godfather … were up to the task.
“Stop it,” I wanted to shout, “there’s nothing to congratulate us about! This is a tragedy. Lives are ruined.”
But they were wiser, and stubborn, and just kept congratulating us. They came to visit laden with flowers and champagne and chocolate cake and presents. They showered us all with love. They told us our baby was beautiful and cooed over him. Together, my son and my friends carried me out of the first shock of grief. They shifted my perception so that I didn’t see just a bundle of symptoms and potential problems, didn’t just see a diagnosis, but instead saw my wonderful boy.
By the end of the second day, Nicholas successfully latched onto his mother’s breast and nursed. We’d been told he probably wouldn’t be able to nurse, that his jaw would be too weak, that he might need a direct tube in his stomach, or to be fed via a tube inserted down his nose, and all sorts of other things. But he nursed. And for the next four days, we’d be back in his room every three hours, providing a kind of rhythm to a life that so quickly became our normality.
I could go on for hours about the first months of Nico’s life, but to do so would be to deviate from my purpose. The key point here is that it was having this boy to care for and to love, and having a community that rallied around us so marvelously, so stubbornly, that brought me from mourning into the joys of parenting. And the joys are immense.
But think back to that moment when my son was born and I heard the words, “Down syndrome.” Grief. Fear. Ignorance. Incapable of rational thought.
Now imagine being given that news over the phone in week 16 of a pregnancy. And it is over the phone, at least the initial “positive” screening result, because that’s the only way to do it.
In the pre-natal context, there’s no child to care for, to love, to nurture, and to see as something real. There’s no child around which the community can gather, praise, tickle, focus on. There’s just this diagnosis and a shape on an ultrasound machine for a few minutes to counter the fear and the grief. That shame we felt, the desire to hide, was only countered by our friends showing up at the hospital with their powerful words and love.
How is anyone expected to cope in that moment? Absent powerful support structures – spouses, family, friends, faith, whatever it takes – how is someone supposed to get through that?
|My son and daughter play in the backyard.|
That’s the goal of this campaign, to let people know that we aren’t alone, that the birth of a child with Down syndrome may come with a long list of worries, but also deserves congratulations, and can lead to a laughing boy sliding down a waterslide into the waiting arms of his sister (or whatever your life may bring).
There are no guarantees in life, no matter how many chromosomes you have. We’ll have many more obstacles again. Some will make us weep, surely. And yet, we won’t be alone.
13 Replies to “Never Alone – Our Down Syndrome Diagnosis Story”
Great article! Thanks do much for sharing! I got my daughter's diagnosis over the phone when I was driving down a busy freeway at 18 weeks pregnant. It was a horrible experience.
David–thank you for sharing your story. Several common points with mine (diagnosis given within minutes of our children being born) but several points where our stories diverge, because everyone's story is different. Thank you for applying the feelings of ignorance, shame, fear to the prenatal context and for supporting the campaign to support these expectant moms with accurate information.–Mark
Thank you for sharing that! I am glad you had such great friends who embraced your son and encouraged you to celebrate his birth.
I think you make a really good point about how isolated people are receiving a prenatal diagnosis and how that can result in not getting complete information.
Yeah, we're really lucky. Also – and I'll blog about this soon – my friends spent the 24 hours between our post and coming to see is in frantic conversation and research figuring out what was the best thing to do.
they got it right.
What a great piece – so vivid and moving. Will share…
Thank you Hillary. And thanks again for sending me your book, I enjoyed looking at it and will pass along the link to people looking for ways to reorganize their writing lives.
I appreciate your post on this David :-).
Thanks for this heartfelt story. I worked for several years as a service coordinator for an early intervention program for families with babies and toddlers with disabilities. I think you have a very important point about the shame and isolation families endure with prenatal diagnosis.
Whew just read this and wow, I shed some tears. Thank you for sharing this. I too think my husband, my mom and my friends were what me see finally that she was just simply my child. Beautiful story David, truly. I even shed some tears but I'm kind of a weeper:)
Thank you Ginger.