They Told Me My Daughter Had a Zero Percent Chance of Survival

Six years ago I went to the hospital for an ultrasound. I had recently suffered a second trimester miscarriage and needed to know that the Rainbow Baby that I was carrying was alive.

She was.

But with fluid separating her skin from her body – a condition called “diffuse fetal hydrops” – and with heart holes, the doctor told me that she had a zero percent chance of survival.

Let’s hold that a moment: zero percent.

He said she had a zero percent chance. He said that I should have an amniocentesis, not for her as she had no chance of surviving, but to know what was going on so that we would be prepared for a similar situation should it happen with a future pregnancy.

Gulp. Zero percent.

So I did. I went back in the hospital with my husband by my side, and had the amnio, which ultimately revealed the presence of an extra chromosome. Down syndrome.

By the time our baby was born, her diffuse fetal hydrops had “miraculously” resolved itself, as had her heart holes.

Moxie Eleanor Xuan Mai was born with no health issues whatsoever.

Tell me why now.

Tell me why it’s OK for the doctor to give a sentence like “zero percent.”

Tell me why he can get away with this, when if I had believed him and followed through on his recommendation to terminate her life, I would have ended the life of a perfectly healthy child – not that there is anything wrong with a child being born unhealthy. It’s simply that by his own reasoning – health – he was completely, utterly and profoundly wrong.

Tell me why doctors can say “zero percent” and not be held accountable.

Tell me how many other babies are aborted based on a doctor saying “zero percent.”

Tell me why.

Tell me why a doctor – or any person for that matter – can say things to new mothers of a child with Down syndrome.

Tell me why it’s ever OK to spin out baloney, whip up a supposition and slap “Down syndrome” on it. We’ll believe it because we all know so little and are scared.

Tell me why so many of us are scared of Down syndrome.

Tell me why.

Tell me why for every little thing that my daughter does, I still feel a strange urge to talk about it, as if her life in and of itself isn’t something to be celebrated. It needs to be explained, justified.

Tell me why.

Tell me why I see this incredible spirit bursting from her, her light, her energy, her glee – and even while I marvel at who she is, I think things like, “if only I had known this when I was pregnant.”

Tell me why people will jump to the conclusion that she is “high functioning” because somehow so much beauty and moxie are not justifiable in someone who isn’t.

Tell me why we care so much about “functioning.”

Tell me what that means anyway.

Tell me if it’s important in living a life that is meant to be lived.

Because I can tell you this:

“Function” as a verb means ‘ to work or operate in a proper or particular way’ and as a noun, it means ‘an activity or purpose natural to or intended for a person or thing.’

Moxie operates in a particular way – which may not be proper. But there is no doubt that her movement in the world is with purpose natural to and intended for her person.

She is exactly who she should be.

Moxie is now 5.

Everything that I want to say about her sounds wrongly quantifiable or as if I am justifying who she is, what she is about. I want to say how bright she makes our family, how her energy and light indisputably make our world a more enjoyable place to be. I want to say how smart she is, how creative, ballsy and curious. I want to say that I thank God every single day for this child, this child who I would have aborted if I had listened to what the doctors said.

And so even as I celebrate the fact that she came into this world, I want to know why. I want someone to tell me why doctors can say “zero percent” and not be held accountable. I want to know why we, as a culture, are so quick to jump on and eradicate what we suppose will be imperfect when it was so very perfect all along.

Related post: Sometimes I Forget That Our Son Has Down Syndrome