(This is a "two day" post because it took me two days to write it due to the significant amount of emotional stamina required to write it. So I think it qualifies for both Day 8 and Day 9 of the SBC)
Content Note: Discusses infertility, miscarriage, abortion, medical malpractice, sexual assault, medical/institutionalized racist/misogyny, ableism.
This post was inspired by Richard Dawkins's ableist and offensively anti-woman comments surrounding the immorality of not aborting fetuses that test positive for Down Syndrome. This blog post touches on some extremely personal and difficult to write about topics and, for that reason, comments on this post have been turned off.
I was 19 weeks pregnant.
19 weeks and three days, to be precise.
It was February 5, 2010, and it was unseasonably warm for this time of year. It reminded me of my wedding, back in February 2008, where the sun shone so brightly that it practically melted away all the snow while we were in our ceremony. I had to wear rubber boots to pictures. It made for some interesting shots.
It was a warm, beautiful, perfect day. Like that one.
And I could not believe that I was going to get to see my 19 week old baby.
Fetus. I was going to get to see my 18 week old fetus. That's what they call it, after all.
But after years of infertility and 7 miscarriages, all I knew was this. This fetus moved inside me. It had finger nails and eyes. It had a personality already- I knew it's playful times and it's quiet times. So, while I won't argue with the medical community about the fact that it was a fetus, please try to understand that- to my heart and to my soul- it was every bit as real a baby as a baby can be.
And in only 22 more weeks (or so) it would be mine to hold.
The ultrasound went beautifully, though the baby wasn't inclined to show me its gender. It didn't matter. "Healthy baby" is all I cared about.
"Born alive" was my personal mantra.
I was filled with beauty and joy, but still didn't share much about the experience on facebook or otherwise. No belly pics. No ultrasound images. No daily updates.
I'd been burned before, too many times to take the risk.
One week later, on February 12th, I received an extremely unexpected phone call. It was from my OBGYN's office, asking me to call them immediately. So, despite being at work and surrounded by colleagues, I picked up my cell phone and called.
I was expecting an appointment to be rescheduled. I was expecting possibly a problem with my doctor's schedule, requiring a change of practitioner.
I was not expecting to be transfer to my doctor, to be told that he would have 'preferred to tell me in person, but that since he was leaving for Mexico for two weeks and the window for termination would be closed by the time he got back, this was the only choice.'
I did not expect him to tell me that there were some "irregularities" with the pregnancy- and showed what appeared to be a pericardial effusion, a pleural effusion, some dark spots on the brain (probably a subdural effusion) and a 'two vessel chord' (single umbilical artery), all of which lead him to conclude that the fetus likely had a condition called Fetal Hydrops.
I could barely get the words out of my mouth: "What does that mean?"
He launched into some complex medical explanation, and I cut him off:
"But doctor, what does it MEAN?"
"It means," he responded, "that your baby is unlikely to survive to term. And if it does, it will likely have little to no quality of life and will die shortly after delivery. It also means that there is a risk of hydroencephalis, a condition that could lead to fatal complications for you if it develops too far."
"So...my baby is going to die?"
"That is likely. And continuing with the pregnancy is extremely risky. We are going to want to have serious discussions surrounding whether or not you should consider termination. Babies born with these types of conditions have no quality of life to speak of."
No quality of life to speak of.
The words felt like they were hanging in the air.
The conversation went on for several minutes. I don't remember much of it. I do remember telling the doctor that no, we would not be terminating the pregnancy- certainly not without receiving a second opinion, and I remember insisting that we be booked at the perinatal clinic for follow up and My husband and I had already discussed this several times throughout our marriage- what would we do if?- and we knew that it was not a route that we could take. Not after 7 miscarriages.
(This is not a religious or moral statement on abortion. We are both supporters of a person's legal right to body autonomy, including the right to terminate an unwanted pregnancy, and Mr. Dulock is agnostic, bordering on atheist. But again- you have to remember- emotionally and psychologically speaking, this was our child. And we were invested. We were as 'all in' as you can get. We knew and understood the risks, but this was our child. Our child who kicked my belly. And had finger nails. And got the hiccups from 10am until 1130am every single day...)
Of course, it was still a conversation to be had, and it was a tough one. Many tears were spilled over the course of the next several days. There were so many unanswered questions. So much fear. So much confusion.
And we were alone, abandoned by the medical system that was supposed to guide us.
So, I did what I do best. I turned to the books. I started to pour over medical journals, by the dozens. I learned absolutely everything I could about the various irregularities, compared studies examining quality of life in FH, read about care for fetuses born with FH as well as antenatal treatment options. I discovered that up to 50% of effusions on ultrasounds can actually resolve themselves and can be the result of issues with the U/S picture quality, angle, or even caused by excess fluid if the mother has had cold or flu recently (which I had).
I also read up on the laws surrounding abortion in Canada. I learned that my doctor was making a very preemptive recommendation based on what I can only assume was outdated information and a desire for expediency. It is also possible that he was trying to 'spare my feelings', but I'm not the notion of what was really best for me was that strong a motivator given that he gave me the news on the phone, while on his way out the door to Mexico.
He lost my trust. The entire system lost my trust.
I armed myself with knowledge- not from Dr Google, but from actual doctors and scientific studies.
I was ready for battle when I walked into the perinatal clinic two weeks later, ready for my war to begin...
It was pretty anticlimactic, as far as 'wars' go.
The ultrasound showed a few abnormalities that would "need to be monitored" but the perinatologist said that he saw no indication of pleural or pericardial effusion, that the brain appeared to be developing properly ("if perhaps a little on the large side...") and that he saw "absolutely no reason to recommend termination of the pregnancy."
In fact, they weren't even sure why I was at the clinic to begin with, aside from the fact that I was showing signs of HELLP syndrome, a condition which would eventually land me an extended stay in the hospital and a premature delivery.
Developmentally, the baby was pretty close to perfect.
When I asked how the information could have changed so dramatically over the course of just to weeks, I got an 'unofficial' explanation that it was not uncommon for doctors to jump the gun on termination around the 18-20 week mark because otherwise women aren't able to access an abortion if things get worse.
"Abortions in Alberta are only performed up until the 20th week of gestation, unless there is a medical risk to the mother's life."
My jaw dropped.
Could that really be what just happened here? On the off chance that the complications did not resolve themselves, the assumption was that I would want an abortion, would regret not having one and would no longer be able to access it as a medical option?
That was when my rage turned to fury.
You see, part of my 'privilege' package is that I am rather well educated and a very strong reader. I also have gifts when it comes to information recall. My formal education was in political science and sociology, which results in my having a better knowledge and understanding than many of Canada's history and laws.
And I knew as a fact that abortion in this country is completely legal and un-legislated. There are no laws outlining how and when a woman should have access to an abortion, which inevitably results in the fact that women have the right to terminate their pregnancies up to and including the moment of birth.
However, it is slightly more complex than this.
You see, in Canada, the professional medical societies enforced their own standards of abortion law by creating unanimous policies regarding abortion access. Absent medical need (read: risk to the mother), women have an extremely difficult time accessing an abortion in this country past the 24 week mark.
Now, I am not going to comment on whether women *should* be able to access abortions passed this point. Nor am I going to entertain debate on whether or not abortion should be legal. But it does concern me gravely that it is doctors that are controlling women's rights to choose- doctors who have not been elected, are not held accountable to the public body in any way, and do not have to exercise transparency in their medical or policy decisions. There is no platform for debate, no special witnesses from outside the medical profession who can offer scope beyond the 'body' and discuss the social implications of abortion access.
And, I'm sorry but that's not how a democracy is supposed to work. Doctors should not be lawmakers.
It shouldn't be up to doctors to use policy to dictate what I do with my uterus; nor should it be up to bio-ethicist like Richard Dawkins to attempt to use their influence to do the same. Women must maintain the legal right to their bodies, but this legal right is meaningless if there is no practical way to apply it.
(Again, please note that our decision to not terminate our pregnancy had already been reached here.)
But the thought of how many women who had never had the opportunity to have long discussions surrounding disabilities, or who lacked the resources and skills necessary to conduct thorough research on their own, or who lacked the ability to self-advocate and demand a second opinion...the thought of them being in my shoes, being told that their baby was going to die and was possibly going to kill them while at it...that thought turns my stomach.
Let me be clear on this fact: I believe that women should have the legal right to terminate pregnancies for any reason they so choose. The law is not there to legislate morality (really, it's not.) and there is no way, at thist time, to protect a woman's right to bodily autonomy and integrity without this fundamental right.
I believe that women should have the right to choose this for financial reasons, for personal/emotional reasons, for medical reasons and- yes- even because they do not want to give birth to a baby with disabilities. I believe that a woman should never have to justify or rationalize to me- or any one else- her reasons for choosing to exercise control over her own body.
Women should have that right just as much as I had the right to know that there was no circumstance under which an abortion would be the right choice for me. (And given this story, I feel pretty comfortable saying that...) My choice is no more or less valid than any other woman's choice; my choice should impact no one's body but my own.
I do not have a stance on "gestational age" because the percentage of terminations occurring past the "20 week" mark are infinitesimal and are limited almost exclusively to situations where the mother's life is at risk. This is as true in Canada (less than 2%) as it is almost all over the world (in US, 0.08% of abortions are conducted post 24 weeks).
I believe in the right to choose, even when this choice is vastly different from the one that I would make.
BUT I DO NOT believe that the medical system should have the right to sway that woman's opinion because of a systematic and incomprehensible disdain for the lives of individuals with disabilities and differences.
I do not believe that it was ok for the medical system to use very scant information to make a premature judgment and attempt to influence my decision by using vague and undefinable terms like "quality of life" to encourage me to terminate my 'irregular' pregnancy.
And I certainly do not believe that it is ok for them to do so because their own policies make it complicated for women to abort after a certain time frame so adding pressure on them to make quick (and possibly even) premature decisions to fit into "20 weeks of less" Canadian status quo
When the medical system throws around terms like "Quality of Life", a term that lacks both definition and context, and fail to provide sufficient time and support for women to sort through the information regarding the decision to terminate a complicated pregnancy, what they are doing is creating a layer of pressure and exerting a completely inappropriate amount of authority and control over the decision-making process.
The reality is that women who choose to use medical practitioners in their birthing journeys put a significant amount of trust into these individuals. We expect them to be transparent with their biases, and to be supportive of our decisions and our right to oversee our own medical care. We also expect them to comply to the ethical concept of "informed consent", a process that requires not only a full transparency in the information provided (pros and cons of the procedures itself, and of the decision to not have the procedure) but also should include a disclosure of personal bias when one exists.
Few would argue that a doctor treating a woman whose fetus has tested positive for Down Syndrome, who happens to be the parent of a child with Down Syndrome, must be transparent of her likely bias towards continuing the pregnancy or must- at the very least- recognize this bias and ensure that it does not interfere with medical care. This is likely not a point that would be argued by many.
However, what we fail to recognize is that the same must be true for the doctors who have an ableist bias- a pervasive belief that anything that is not deemed 'typical' in terms of is somehow inferior, or a problem to be fixed. This mentally has been the dominant one in the medical field, likely since the birth of the field itself, and has led to the medical profession performing atrocities that- to this day- boggle the mind.
Let us not forget that it was doctors who created and undertook the Tuskegee Syphilis Study (In the Negro Male) which followed a group of 600 poor, African-American men, 399 with untreated syphilis, for 40 years to examine the effects on their bodies. These men were not only refused treatment for their illness, their families were as well. This is only one of many historical examples of medical racism.
Let us also not forget that it is the medical profession that gave us the term "hysteria", blaming 'wandering uterus' and other nonsensical conditions of both the physiological and mental variety (research today indicates that the symptoms used to diagnose hysteria would most closely fit those of PTSD, usually resulting from sexual assault), allowing medical practitioners to assault women's bodies to 'manually manipulate' or 'orgasmically stimulate' as a cure. Again, this is just one of many examples of the atrocities the medical system has perpetrated against women.
Let us also not forget the fact that, up until 1974, homosexuality was considered a "mental illness", and curing the condition was something strongly advocated within the medical community. (Note: "Curing" homosexuality used the exact same process that many people still use against Autistic people to attempt to "cure" them of their condition.)
So let's not kid ourselves about the fact that the medical system, while oftentimes an indispensable force of greatness, is also often a force of great harm. Bioethicists (which, ironically, is the profession of Richard Dawkins) must begin to consider that social/medical bias against disabilities is a topic that must be acknowledged, discussed, and- ultimately- discarded in order to protect the interests of this all-too-often vulnerable population.
Continuing to forward arcane ideas of "quality of life" without either a) a sufficient and comprehensive definition that includes not only the medical disability model, but also the social model, b) providing women with as much objective and comprehensive information regarding not only the risks but the positive outcomes of those living with complex medical conditions, is a failure to acknowledge bias and prejudice towards those with disabilities and- unchecked- results in a continued, unrecognized predisposition towards eugenics.
It is also a continued violation of the principles of women's right to body integrity. Making the choice to terminate or not terminate a pregnancy is only really a choice when the information that you are using to make that choice is accurate, comprehensive, and as objective as humanly possible. In the absence of objectivity, a balance of opposing points of view should be provided to allow for as thorough an understanding of the situation as possible.
Failure to ensure that these measures are in place is to allow doctors to continue to exercise a completely inappropriate amount of influence over a mother's decision to terminate a desired pregnancy, a terrifying reality that I have lived first hand.
Put bluntly: If my doctor had his way, my son would not be alive today.
I am grateful that I knew and understood that the choice was not his to make.
(*It should be noted that I used the same doctor for the birth of my daughter. With this exception of this one issue, his care was exceptional and when I made my intentions clear regarding my pregnancy, he respected my right to do so.)