I left a comment this morning on HealthyDebate.ca, on an article titled “Non-invasive prenatal testing and chromosomal microarray: changing the landscape of prenatal genetic testing” by Jeremy Petch, Timothy Caulfield & Nan Okun. I almost never comment on blogs, but this article was sent to me by several people who thought I might have something to say in response.
My comment felt incomplete. Here is my more considered response.
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I am sometimes asked, “What would you have done if you’d known your son would have so many disabilities?” I don’t answer, because I don’t know. It’s nothing more than an interesting thought experiment, as I can’t not be myself. I can’t pretend I’m less experienced than I am now. It might seem reasonable to ponder the probabilities given who I was at the time – but the truth is I surprise myself with my own decisions all the time. I’m not always who I think I am.
As regular readers will know, I raised a child with severe disabilities and feel I am much better off for it. It’s an experience I value deeply and one that has shaped me immeasurably. But am I better off than I would have been without Owen? Impossible to say. I think I have become who I am through the simple act of living a human life – perhaps this path was (is) no better or worse, no more or less rewarding, than a different path in a parallel universe.
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In the community of parents who have had children with disabilities, the concerns and arguments against routine screening – and all its implications – can be heard far and wide. The implications of routine screening are that more and more people will abort anomalous fetuses with diagnoses, as well as fetuses considered to be at a higher risk for developing an abnormality. The follow-on implication is that women will increasingly feel pressured to abort, and those who do not will face undesirable consequences – including lack of support and discrimination.
These concerns are understandable. Ironically, under the pretense of personal choice and autonomy, our overall options will likely become more limited – at first through social pressure, then eventually perhaps through legislation. This is mere speculation of course, but these red flags should be explored with persistence.
Louise’s comment (on the blog post referenced above) rightfully calls into question the quality of prenatal counseling that is delivered with advanced prenatal screening findings. I believe that prenatal counseling is fundamentally biased, those biases are not presented transparently, and the informed consent process as we know it is a laughable concept – despite any particular clinician’s earnest efforts to present information neutrally. It’s lamentable indeed that some women feel coerced or persuaded by their clinician to terminate their pregnancies because of anomalies.
But as always, there is more to consider.
I’ve been reflecting on some of the additional arguments against screening which have nothing to do with the counseling issues I’ve described above.
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My personal bottom line falls firmly in the ‘pro-choice’ camp. And it’s not just me: Canadian law permits women to obtain first trimester abortions for whatever reasons they see fit. Many of my fellow mom friends would agree in principle. So what do we do with the discomfort we feel, knowing that many women abort their fetuses with the exact condition our own children are living with? Some are deeply offended. Some want to shout, “But if she only knew what a joy this is, surely she would not abort!” With no clear culprit in sight, blame is then turned on the clinician for not conveying strongly enough the possibility that raising a child with a disability might be a wonderful thing.
I won’t deny that a careful reading of some of my earlier blog posts may reveal similar sentiments, even if not expressed exactly that way. But my views have changed. I cringe that I thought it was a good idea to try and change hearts and minds, to try and rewrite a narrative about my own life that positions me as a winner in the genetic lottery, not a loser. (Today, I don’t feel the need to convince anyone of the value of my experience.)
But I do recognize the rallying cry – it’s a longing for community, a yearning to be brought in from the cold. I had a deeply felt need for others to see that I had a desirable child. I was heartbroken to think others would not choose to bear a child similar to my own. Perhaps I wanted them to feel they were the ones missing out on something great, not me.
I openly acknowledge that most of the time, the work in caring for my severely disabled son was brutally hard and painfully isolating. And yes, it was also deeply rewarding in profoundly personal ways. However if no one else ever has the same experience, I will not despair – nor will I think that some kind of moral decay has gripped our society as women continue to make personal decisions about their pregnancies.
We each have our own personal heartaches and victories. Life is wonderful, cruel, indifferent. Raising a child with a disability is not the only path to personal fulfillment. We should not insist that everyone must do it, nor should we try to convince anyone that they should.
Hey Jen — I didn’t realize anyone else had commented on the healthy debate piece until I saw your post.
I am not arguing from a pro-life perspective. I am pro-information. I would like to hear how you think the counselling part of the process could be improved.
As a young adult ignorant about disability, I would have liked to hear a geneticist or genetics counsellor say that there are many families who raise children with disabilities and that despite challenges, don’t wish they had terminated their children. I would have liked to have heard that families have an incredible ability to adapt in a way that is hard to imagine in advance (and there’s all kinds of research on this). I would have liked to have been told that if I chose to continue my pregnancy, health professionals would be partners, walking alongside me during my pregnancy and in raising my child (not judging me). I would have liked to have had a discussion about what my values were in terms of parenting and how I felt about screening for disability. I would have liked to have read some vignettes from families writing about their families that include a child with disability, not just a brief clinical description that’s heavily loaded on defects and non-existent on humanity. I would have liked to have been presented with a picture that was much broader and more sophisticated than “burden.” I would have liked to have not been berated/yelled at and made to feel irresponsible because I didn’t want to lose my child to miscarriage as a result of an amnio. I would like to not have an obstetrician tell me that if I miscarry my 4 month old moving fetus, I’ll be depressed, but that’s okay because then I’ll get pregnant again and have a “normal” baby. I would have liked to have not felt so judged by a genetics clinic that viewed my son ONLY as an “abnormal baby” to be prevented, that when I was pregnant for a second time, I had an amnio, not because I wanted to or felt it was the right thing for me, but because I didn’t think I could cope with people blaming me for bringing 2 kids with disability into the world. I would like to not hear from parents of children with Down syndrome that they are asked on the playground, in the presence of their child, “Didn’t you get the test?”
And finally, I would like there to be an evaluative part of every prenatal counselling session and follow-up at a later date, so we can see if parents feel well-supported in the process and we can improve counselling, based on what users say.
Would love to hear what you would like to see in terms of changes to counselling. If you believe that counselling is “fundamentally biased,” how would you like to see it changed? Is it worth changing? Or should we just accept that medical folks without disability experience will never “get it” and carry on.
I don’t think that’s the same thing as trying to “convince” people to not terminate based on disability.
I think all of healthcare is fundamentally biased :) It exists to fix things. It’s not set up to be concerned with social welfare or constructing a utopian society based on ideals of perfect diversity and equity.
The very act of screening is itself a bias: a bias against surprise, against risk of problems, against nature taking its course. The fact that clinicians might want everyone to be screened makes sense to me, in that its consistent with healthcare’s goals. One OB I know thinks of screening as part of good prenatal care. From the point of view of healthcare: the more they know, the better they can support both the woman and the fetus.
We medicalize everything now – birth of course, and increasingly, death. It’s the unstoppable train of progress. I don’t think we can expect a shift in fundamental mindset from clinicians or genetic counselors. Bedside manner and language can be a problem, no doubt – this should be addressed through training and feedback. But given the whole system exists in order to identify and root out problems, it’s the wrong place to look for alternatives.
Hi Jen — I think it’s defeatist to say that the health system is about “fixing” only, and not to say that we have a role to call for it to also be about “wellness” and recognizing that life can be good even with disability. I’m talking about making information that’s shared balanced — not saying that everything is wonderful about having a child with a disability. I’ve heard of women who decided to continue pregnancies after trisomies were detected, and they had to change obstetricians, because the obstetrician they had disagreed with their decision to continue. Is that “supporting” moms and their fetuses? This is a recent article in the American Journal of Medical Genetics. When geneticists gave me a written medical description of Down syndrome, I would have liked it to be paired with something like this. Medicine is also about doing no harm. And the amount of emotional stress that prenatal testing caused me is not a healthy way to go through a pregnancy. http://racheladams.net/wp-content/uploads/2011/09/10.1002-ajmg.a.36534.pdf
I need to say that the health system is about fixing and is not about wellness. Doctors learn the art of medicine (let’s face it, it is not a science) and if this does not work, they try that. It is not their place to be concerned that ” life can be good even with disability.” If that was, then they would not try to “fix,” “cure,” etc. It may be the purview of social workers, mental healthcare workers, clergy, even family to be concerned with that and other types of wellness. If a doctor disagrees with a woman’s choice, and acts differently because of it, it is time for a different doctor. It is not part of a doctor’s obligation to support a patient’s choice. If a patient chooses to not give their child a life sustaining medication, does the doctor need to support that? If the patient makes a decision for him/her self, the doctor does not need to support that either. Whatever it is.
“Is that “supporting” moms and their fetuses?” Doctor’s have the right to support or not support patients’ decisions. Personally, I would only use a doctor who would support whatever decision I made as long as I was not endangering my life (or Pearlsky’s). No matter how stupid he/she thought it was. And yes, I have found them, but they are rare.
If your prenatal testing caused emotional harm, then don’t do it again if that harm outweighs any possible knowledge gained. It is not “medicine” that caused you harm, it may be the inappropriate actions or words of the messenger of the results. Next time ask for the raw results to be sent to you without interpretation.
Jennifer, I agree with you. About everything – I feel that same way.
A voice that is often left out of the discussion about prenatal genetic counselling is that of adults with disabilities. Massive amounts of money are being thrown into research to prenatally identify autism (which I understand will not be a conclusive diagnosis but suggestive of risk). What do adults with autism think about this? I listened to a panel of young adults with Down syndrome and one spoke about how the screening violates the human rights of ppl w Down syndrome. Isn’t it paternalistic to have any discussion about this without adult voices of those affected?
I disagree here Louise. Not sure how screening is a human rights violation? Perhaps you mean screening and then selecting for Ds and then aborting? But even then. . . As fetuses have no status or legal rights, there are no violations occurring.
I can see the point you’re making, but I’m not sure there is any single table at which this dialogue is taking place.
Does the Ds population have an interest in strengthening their numbers. . . ? ‘Those affected’, as you mention, don’t have special status in this argument. No one is suggesting we do away with living people (although it could be interpreted that way if someone is coming at this from a pro-life standpoint).
(BTW these are the same concerns the deaf population has had for decades – ‘normal’ people are the gatekeepers to decision-making about whether or not certain traits will survive birth or childhood.)
One final request for prenatal counselling. I don’t ever want another parent whose newborn has just been diagnosed to have a genetics counsellor – now a head of a dept – say “you have every chance of having a perfect baby — next time!” If we are graduating gen counsellors who don’t “get” why terms like perfect, normal and abnormal are problematic, something is dangerously wrong.
Jennifer, I am in complete agreement with you. I found this line of your comment on the article to be a particularly astute observation: “Is it somehow less valid to abort for anomalies than it is to abort for convenience (which has been socially sanctioned for decades)?” Louise, as seemingly insensitive and inflammatory it is to say this, I am deeply challenged by individuals with Down’s or autism who are capable enough to have a panel discussion attempting to set the agenda for parents-to-be who may end up being lifetime 24/7 caregivers to individuals with severe combined physical and intellectual disabilities. I would suggest that those with disabilities who have a voice focus primarily on seeing to it that quality supports for families who care for individuals with disabilities are solidly in place and last the lifetime of the individuals necessitating them. The reality is that adult services are dismal and subject to long waiting lists…some up to a decade. Residential services for complex care need individuals are few and far-between. Their cause would be better served by focusing on what happens post-partum.
Hi Claire — I’m not suggesting that adults “set the agenda.” I’m suggesting that they may have input into how information about their disability is presented from a “real-life” perspective (and no, not just from the perspective of the most able). Of course I totally get the lack of resources for adults with severe disabilities.
I think health-care is not just about fixing, but also about healing, and that will mean different things for different people. But if you are only presented with the “defect” picture and made to feel that you are irresponsible for not terminating, that doesn’t amount to informed consent.
There is a huge prenatal testing “business” where companies profit from their tests
being used as widely as possible. I’d be interested to know how these companies “lobby” folks who are on the genetics testing “frontline.”
I’d also like to know what that business is worth on an annual basis.
My unsolicited two cents …
If you will not terminate a pregnancy, then get genetic screening for only those things that can be fixed in utero. If you are willing to terminate a pregnancy, then get a full screen. OR, don’t screen at all. And, if your healthcare providers give any advice, try to sway you, “flavor” their care … then change said healthcare provider. They are not your partner nor clergy.
To further stick in my two cents, IF you screen, and IF the pregnancy will result in a fairly high level of disability (and only YOU can determine that limit), and IF you are willing to terminate the pregnancy, DO IT. Absolutely do it. (Now will come all the hate mail.)
Would you enter a marriage knowing that your intended spouse is an alcoholic, pathological liar, and cheats? (Maybe, but that may not be a good decision.) Would you go to a college that you know you would drop out of ? (Maybe, but that may not be a good decision.) These are not exciting challenges that you would relish (well, maybe they are, but I digress). Or do you keep looking for a more appropriate spouse where your efforts, instead of going into co-dependence will go into happiness? Or do you apply to colleges that will positively challenge you and properly prepare you rather than send you into despair? The comparison I am making is … when you are making a life altering decision, consider the personal consequences and the level of difficulty and heartache you want in the next 40 (?) or 50 (?) or 10 years …
And if you choose to continue a pregnancy that you know will result in a level of disability that will make your life complicated or different than your dreams, know that the medical community, the community at large, the support systems, and potentially your personal support system (your marriage will suffer) may all fail you. Because of your decision, and beyond. And that MUST be taken into consideration, because they will complicate your life more.
It is all biased. Everyone is biased. I am biased. But then, I have been there more than most. You want a kid like mine? You are crazy. You want two? You can have both of them. I want out of here. But alas, they made me who I am today and I love them.
But if your doctor shows bias, run.
I have a problem with your analogies, S.D., though I am not certain I can adequately express exactly what that is. The particular life experiences that you chose, I think, are too dissimilar from having a child to be useful here. College and marriage do not compare to giving birth to and nurturing the life of a child, regardless of ability. Whereas poor educational and marital choices have only negative influences on a life, it can be argued that the very significant challenges of raising a child with severe disabilities is not devoid of goodness and positive value for the both caregiver and child. Some people adopt and choose to raise children with disabilities. Why? Because they are stupid and crazy or because they find satisfaction in that particular lifestyle? There is a good deal of give and take in child/parent relationships that cannot be so easily dismissed, imho.
Hm, not sure Claire. Your adoption comment: this applies only to living children. No one goes out of their way to conceive a child with disabilities… (or do they?!)
I agree SD’s analogies are a bit loose, but I take his point: if you have a peek into the future and you don’t like it, choices made now are simpler than choices (or no choice) later.
I get it…and he said exactly as you said when I contacted him personally about it. I think I got lost in the words.
SD *high five*
Re no one goes out of their way to conceive a child with disabilities — well yes, some people who are deaf and want their child to share their culture do. There are people who choose to have kids even though they know there’s a very high chance their child will have a medical condition they have. I know a mom with osteogenesis imperfecta who has 3 kids, and one has OI. Same with a dad with charcot marie tooth, a neurological disorder. Perhaps I shouldn’t have had kids. I’ve had 5 severe clinical depressions.
I think some people choose to parent the child they’re given. They don’t go out of their way to “ask” for a disabled child. But they’re not arrogant enough to think that they’re entitled to a child with specific characteristics — at birth or decades down the line.
Sorry, my post lost its meaning because of brevity. I meant, no one pre-selects to have a disabled child instead of a nondisabled child – which was specific to Claire’s comment about adoption. Deaf is different as it’s cultural, unlike virtually all other disabilities.
Hi Jen — Both OI and charcot marie tooth are associated with disabilities (in the latter, my friend walks with braces and uses a wheelchair). I believe there’s a cultural component to many disabilities (it’s what Andrew Solomon refers to as a horizontal identity). It may not involve a language but it certainly involves many shared experiences.
I have really cherished all the words written here. What an amazing series of perspectives. As a (retired) midwife, I counsel people to be very careful of the maternal serum screen or the triple screen that is recommended across the board here in Nova Scotia. It has a painfully high false positive rate and the stress associated with this is very high. Studies (Sakala and Corey) suggest that women dont really let go of this stress and it very much affects parenting. I counsel similar to what “sd” says: if abortion is a consideration for you then this series of testing is worth the stress. If that is a no go zone then why are you taking on such stress that will result in no changes in your
actions? You might be interested to know that a huge majority of my patients choose not to have the triple screen and accept the unknown of genetics and fate and parenting.
Jen! Thanks so much for commenting and sharing your perspective.
So interesting to hear about about your patients’ decisions. I have a keen interest in clinical communication and bias, and often wonder how outcomes might differ depending on who does the counseling.
I suspect your own experience is a huge credit to your own reasoned and calm approach. Some genetic counselors can be insistent that the patient ought to ‘know everything’, which not only colours how the patient makes a decision, but we also know these screens are not diagnostic (so ‘knowing’ isn’t really on the table). Also, with new tests like microarray we often won’t know what to make of the results…
Thank you Jen for your advise to be careful of the maternal serum screen or the triple screen.
Prenatal screening is a choice which an individual make and yes, this decision is good, atleast you know if your baby going to have any abnormalities.