The truth about my baby I was too scared to face

Analise is 10 days old and sleeping in the plastic bassinet next to the bed. I look down at her face, pale, smooth and slightly translucent, a roadmap of blue veins visible beneath. She has a mop of feathery auburn hair and I hope that her eyes fluttering beneath thin lids will stay blue, unlike her brothers and sister. I feel so blessed, two daughters and two sons, a loving husband, a life I had always wanted.

It’s early spring, and the dreary view outside the hospital window is of a grey sky with a watery sun over a rooftop parking lot. I was sorry to have only sandals on my feet to carry Analise out to the car, it looks so cold out there, and I shove my icy feet under the faded hospital blanket. Tired of the stack of magazines by the bed, of flipping through the channels on the miniscule pay-as-you-stay TV mounted in the corner, I let out a sigh. Let’s just get on with this, I thought, staring at the door, willing the doctor to our room. I want to go home.

Soon there was a knock and our doctor stepped in with a small smile. She was my age, mid thirties and dressed professionally, with long dark hair swept away from her face. We had met two days ago but already I felt very much at ease with her. I think that under different circumstances that we could have been friends.

“We’re all set.” I say after greeting her, eagerly putting on my shoes. I lift the baby to my chest, wearing her new pink sleeper with the puffy white lambs. After two sons her entire wardrobe was varying shades of pink, and I relished it. “I guess that we’ll see you tomorrow?” I ask, still sitting back on the bed.

The nurse had earlier explained that for the next few days we would have to return Analise to the hospital every morning until her billiruben levels were below an appropriate level. What a pain, I thought mildly. But, if it means that she remains healthy, it’s a small price to pay. We can get back to our schedules and rhythms, albeit with a newborn thrown in the mix. I wonder, absentmindedly, if I should pick up a pizza for dinner on the way to the house.

“Sarah,” the doctor begins softly, “there is something else that I want to talk to you about.” Something in her tone caused my heart to beat faster. She took several steps towards the partially open door leading to the nursing station and closed it. As I watched her it’s as if time slowed down while the air in the room billowed out just before it shut.

“Does Analise look like any of your other children?” she asked.

I found myself suddenly defenceless against something that I had pushed out of my mind over and over since her birth. Something that none of the nurses had noticed, that my midwives, family and neighbours hadn’t commented on. Something that I had almost convinced myself wasn’t actually there.

The truth was that Analise did not resemble any of us the instant she came into this world, three weeks early and within an hour. The midwife had laid her on my stomach while I caught my breath and she looked up at me, covered in blood and life sustaining matter.

Her eyes… I thought with sudden alarm, a sharp and unexpected strike into my heart. But it wasn’t because they were open so soon, or because they were so beautifully blue. It was because these eyes were so foreign and yet vaguely familiar to me. There was no instant joy with her arrival, only confusion and growing inner conflict. There were so many differences from the other babies; the small folded ears, the slope of her forehead. All around me people were welcoming and joyous. No one showing any signs of concern, my husbands’ face a mixture of happiness and pride. Surely what I saw would not raise any flags. This is my child, I thought, I love her.

“She looks like Mickey Rooney.” I whispered to my husband and midwife, and we all had giggled, an effect from the nervous and excited energy around us. I finally sighed with exhaustion and relief while Analise scored a perfect ten on her Apgar Test. We’re safe.

Now here in this room there was no escape back to that moment. I was being confronted with my suspicions and there was nowhere to hide, my worst fear right in front of me.

“It’s Down Syndrome, isn’t it?” I said in a throaty voice I hardly recognised.

The doctor gazed at my precious baby for a moment, sleeping soundly in my arms. I had been so eager to hold her, now that I had permission. My sweet baby girl to complete our family.

“That’s what I wanted to talk to you about.” She said quietly.

A blood test ensued and I numbly agreed to genetic testing. Our doctor also suspected a heart murmur and we immediately went for an echocardiogram which revealed three holes in her heart, one having a fifty percent chance of needing surgery in two years. I called my husband at work to tell him the doctor’s suspicions and results. He said all the right things, that Analise was here and that we will love her no matter what. That she is one of us. We’re a family.

Once the lab left our hospital room with my baby’s vials of blood, I clutched her to me, gazed out the window and let the waiting tears flow down my cheeks. I wept for all the things I dreamed for her, entering a world that until one hour ago I couldn’t wait to introduce her to and now fiercely wanted to shelter her from. A place with words like retard and disability. A world that presumes to know her value and dismisses her potential. I cried because I felt so helpless, so small and alone, unable to protect her, unwilling to accept an inescapable reality.

That night in my own bed I was looking at my daughter’s face. It was the same but entirely different now and I wondered how my body could have betrayed me? It had given me a near perfect pregnancy. I had declined the indicative test that had been offered. My last son’s numbers had shown a higher chance for having a child with Down Syndrome and I had spent the remainder of my nine months worrying. I wasn’t going to do that again, I had thought. I would trust my body that all would be well. But it was my body that allowed this baby’s cell division to fail, that couldn’t put the pieces of her heart together properly. If only I had been stronger.

I read about a study once that a new mother could be blindfolded and choose her baby when it was held close to her face. She could instinctively recognise her infant’s scent from hundreds of others. Before now this finding had comforted me. Reflecting on it briefly while nursing my other children, thinking to myself, I would know you anywhere, little one. And now this person in my arms felt like a stranger to me. Her disability, our connection, was behind the curtain and all I felt was anger and fear.

It was another cloudy afternoon when I sat with Analise asleep in her bucket infant seat, waiting again for the doctor to tell me the result of our genetic testing.

“So, as we thought, Analise does have Down Syndrome,” she said conclusively, leaning against a small desk in a simple room. I knew this was true but a hidden part of me thought that maybe we were wrong, maybe there was hope.  I tried to ask a question that was rolling through the trenches of my mind.

“Was it because I…or because we…”I began but was unable to finish. Thankfully the doctor quickly responded after watching the tears pool in my eyes. “Neither of you are a carrier of the gene.” I bit the inside of my cheek, unwilling to cry, unwilling to react, other than to nod my head. At least I was not a traitor.

“One in approximately seven hundred babies is born with this disorder.” Our doctor said reassuringly “This could have happened to anyone.”

But it didn’t, I thought as I drove home that day. It happened to me.

How would I raise a child with special needs? My other kids seemed, by comparison, half way to adulthood. They could read, write and were quickly grasping issues such as world languages and currency. Both of my school aged children’s teachers had commented on their advanced vocabulary and creativity. I was behind enemy lines, uncharted waters. The next eight weeks were met with waves of thoughts and emotions from despair to tearful joy. During it all I grew to realise that my greatest ally was going to be my child, in those intimate moments that cause my heart to soar. I had to grow to know her, just as I had for my other children. Everything else would fall into place. We were in this together, her and me.

As we embark on this journey every milestone, however minute, feels more like a victory. Her first smile, gurgle, coo and giggle seem indicative of the amazing girl and woman she will become. There are times when miserable thoughts invade my day, oppositional fears for her future, but I am becoming better at ignoring them.

Some nights I wake in a hot bed draped in sweaty sheets. I am disoriented, shaking off the remnants of a dream I had of a daughter that was supposed to be. Like a missing limb, I can still feel her, or rather the idea of her, and I have to remind myself that everything will be all right. I reach out in the dark to touch the bassinet by my bed and listen to the small shallow breaths coming from within. This is my baby. Someone I would die for.

I realised there is a choice I have to make every morning, the choice to surrender. I surrender to the love I have for my daughter.

In the end we are powerless against things such as society, biology or a diagnosis. In the end we raise the white flag and pray. We find peace in the virtue of motherhood, that unending love, the primal bond that unites us to our children despite and because of our flaws. We hold on to our babies and to our faith that with every battle, we will come out the other side together, sometimes bruised, but complete.

Did you ever worry about what you'd do if your nuchal translucency test showed a high risk of Down Syndrome for your baby? 

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