In 2009, I went to the hospital for a 14-week scan of the fetus that I was carrying. The scan showed that she had diffuse fetal hydrops – there was fluid separating all of her skin and her body – and holes in her heart.
She was given a zero percent chance of being born alive.
I was told to come back for an amniocentesis to find out what was causing the diffuse fetal hydrops in particular, and I did. The amniocentesis revealed the presence of an extra chromosome – Down syndrome.
The Doctor Advised Me to Abort My Daughter with Down Syndrome
I was advised by the doctor to abort my daughter with Down syndrome.
To be more clear, after he told us that she was going to come with Down syndrome, he asked us when we would like to schedule the termination. When we said we needed to think about it, he referred us to the perinatal specialist.
We met with the perinatal specialist.
The specialist urged us to abort our child, telling us how poor her quality of life would be, coming with Down syndrome.
I asked for specific information related to this “poor quality of life”, a brochure, a pamphlet on Down syndrome? Something?! “We don’t have that, ” he said.
I asked to meet a family with a child with Down syndrome, or to go to some kind of Down syndrome group, “We don’t do that, ” he said.
But, he said, “you really should think about the burden you will placing on your son by having a Down syndrome child.”
The conversation went on, with me asking for more information, the doctor having nothing in the way of concrete, real information, only endless opinions that pointed to his ableism, prejudice, and ignorance.
I was Leaning Toward Aborting My Daughter with Down Syndrome
I have written before about this, but having grown up with disabilities and facing all the ableism and abuse in my life has not been easy. I was terrified of bringing someone else into the world who would face something similar – but potentially far worse than me.
Intellectual and developmental disabilities are, after all, on the bottom rung of the disability ladder. There are frightening levels of abuse occurring with people with all disabilities, but most of all with intellectual and developmental disabilities.
The Struggle of Choosing: Abortion Because of Down Syndrome?
I had been fighting disability discrimination, ableism and prejudice for most of my life in some form or another. I am deaf, I have TBI and also C-PTSD (the latter which has manifested mostly as I have gotten older, with the layering of PTSD – it looks a lot like bi-polar disorder).
By the time I became pregnant with my daughter, I had reached a good place. I had a good job, I had friends, I was married. I felt as if I was liked and respected for my work and for myself, even with everyone knowing about my disabilities: I had “come out” with disability. I had already walked the hard path and had come to a sweet spot.
Thinking that I would bear a child with Down syndrome – bring someone with an intellectual and developmental disability into this world – made me tired. I felt like I had been carrying a sword all my life and had just put it down, only to realize that I had only been whetting it so far; that the real battles were all ahead of me, not behind me.
In the end, my indecision was my decision
I always want this part of my story to read differently, to say something like how I stood up and cried out loudly, majestically for my daughter’s right to live, that I castigated the doctors and marched on out of offices.
I wish I had been fierce at that moment, not frightened.
But the truth is what I tell best and the truth is that I was completely, totally terrified. I was so fucking scared, I couldn’t even really function: I couldn’t sleep, I couldn’t respond, I couldn’t process. I was in this numb-zone of being blanketed by fear, thinking of everything that could come, that might come, that had come. Round and round in a mindless loop, my own ableism, memories and trauma wrapped around and filled me.
In the end, I was stuck in some middle-ground of not being able to unequivocally, powerfully, compellingly say, “NO!” to the calls from the doctor to abort my baby with Down syndrome. In the end, I just closed up and didn’t respond to anything.
My arms went around my body and held tight, my head tucked into my chest and my legs drew up, cradling my unborn child and I walked through the terrors of my mind for the remainder of my pregnancy. I could not talk about my pain or fear, and only told a handful of people that my child was coming with Down syndrome.
Why I’m Glad the Doctor Told Me to Abort My Baby with Down Syndrome
This sounds like an awful thing to say, but at this point, I am glad that I was told that I should abort my baby with Down syndrome.
If the doctors had not told me to abort my baby, I would never have had to go through that grief process to the depth and the extent that I did.
The grief process for me involved facing my own internalized ableism. That is, facing all of the prejudice regarding disability that I have – because even as a person with disabilities, I have ableism – it was sucked into me through cultures I was raised in, through belief systems, through my own struggles with living in an inaccessible world that didn’t see value in the way my body or brain function.
For me, facing my own ableism involved me examining everything that disability is and stands for, and making the conscious decision to accept disability in my life.
In accepting it, I had to work through everything that I was not just scared of, but actually felt terror toward.
Piece by piece.
I was terrified of my daughter being abused (like I had been). I was terrified of her being outcast, a reject, an unwanted. As I have been.
I was scared of her being dull, without sparkle.
Choosing to have her – even if I was not fierce, loud or proud about it – was fundamentally a choice to face my fears. If the doctor had not encouraged me to abort her, I would never have had to make an active choice about any of it. It would have happened to me, as opposed to my own choice, and therein lies power.
Make no mistake though: I don’t think doctors should be encouraging any mother to abort her child. I am angry that my doctors refused to offer me actual information about Down syndrome, all the while bandying words like, “burden” around. I want laws with teeth that with hold these doctors accountable for their words.
But given that this happened already, I am glad that I had an active part in continuing with my pregnancy. I’m glad that I chose to keep my baby with Down syndrome. I’m glad that my fear did not overwhelm me to the extent that I would abort my baby. I’m glad that I played with the cards that I had been given, because it ended up being the best hand possible for me.
My Daughter Has Down Syndrome
She is a pretty typical with kid with Down syndrome. She has difficulty in talking. Articulating does not come easily for her. She is smart, capable – and this is normal for people with Down syndrome. Intellectual disability, I have learned, should never be confused with stupidity. They are very different things.
She is sporty: she is engaged in gymnastics, aikido. She’s a great swimmer and can ride waves expertly with her body-board.
My daughter is funny and is fun. She has a great sense of humor.
She oozes creativity, and is endlessly inspired with artistic ideas – like making her own clay figures while watching a show with claymation.
She gets her little brother to do it with her.
Her life would not be more valuable if she wasn’t so athletic, or if she could speak more clearly; it would not have less value if she were not as fun as she is, or as artistic. It would just be different.
My life, after all, is not more valuable because I can speak clearly or because I cannot hear without hearing aids. It’s just different. I don’t need to hear to be of worth, do I? Well, she doesn’t need to be great at body-boarding to have value to the world.
No; our value – all of us, every. single. human. being. is intrinsic in and of ourselves. It is not conditional upon our physical self.
If we suck at running, we’re still valuable. If we do math well, more power to us.
For people with Down syndrome, it’s no different. Lives are lives and they are worth living, in all of their expressions, talents, skills, weaknesses and weirdness.
We’re good the way we are.
Down Syndrome Resources:
- Lettercase: Getting information about Down syndrome to doctors to give to women who find their baby is coming with Down syndrome
- Down Syndrome Pregnancy
- Down Syndrome Diagnosis Network
- Down Syndrome Groups on Facebook
- The Best Books on Down Syndrome
- Resources for New Parents of a Child with Down Syndrome