"Parents like me often feel betrayed"
November 27, 2017 3:46 PM   Subscribe

Every Parent Wants to Protect Their Child. I Never Got the Chance. To fight for my son, I have to argue that he should never have been born. - Jen Gann "But if you had known, what then? a woman asked me earlier this year, shaking her head, her smile soft with pity. If I responded at all, and I’m not sure I did, I can’t remember what I said. But I know I did not use the word abortion, or bring up our legal situation, or explain the concept of “wrongful birth.” In a roomful of people I barely knew, with Dudley pushing a plastic car back and forth over the carpet nearby, I did not tell her that I do know exactly what it is I would have done."
posted by the man of twists and turns (43 comments total) 55 users marked this as a favorite
Before we left that appointment, the midwife reminded us of the practice’s policy on test results. No news is good news. Unless tests showed something negative, no one would call us. No one did.

That is one Grade-A rock-stupid policy right there.
posted by The Underpants Monster at 4:25 PM on November 27, 2017 [51 favorites]

Ooof. This hit me hard. They've never said so, but I know my parents would have aborted me if they had known what was to come. I was whisked away by the nurses after I was born and my parents were told to make funeral arrangements. I like to say I survived just to spite that doctor. I don't want to go into details here, but the first ten years of my life were rough for both my parents and me.

I expect to be around for awhile so you might think I'd make an argument that this woman is ableist or whatever. But I have absolutely no judgment for her or what my parents would have done. I don't know if I wish they would have spared me, but I can understand wanting to spare themselves. They never had any more kids and divorced when I was 8. I wouldn't be surprised if the stress of my childhood had something to do with it.
posted by AFABulous at 4:44 PM on November 27, 2017 [55 favorites]

The only two children I have ever conceived had chromosomal abnormalities (with outcomes similar to/potentially worse than cystic fibrosis) that were definitively revealed during prenatal testing. We chose to terminate both pregnancies. They were both extremely wanted children and it was a horrible, wrenching decision that I would not wish on my worst enemy. It is odd to sit with the baby's other parent and have to decide: what quality of life is acceptable for our child? What could we allow in terms of pain and suffering? Because to me, the worst scenarios are actually not the ones where it is black and white and the baby will definitely die in utero, as horrible as that is. The very worst scenarios are the ones where the child will probably be born alive, will definitely have multiple health problems, and will likely die a slow, painful, terrifying death from a disorder that has no cure.

But the very worst case scenario for me would be if we had not been informed despite having done prenatal testing. That is what I try to remember when I think about the awful experience we went through with our diagnoses and terminations. At least we had the information to be able to make the choice. Others choose differently, of course, and I respect that right. But for us, for my children, I am glad I was able to make that choice as a parent.
posted by Secret Sockdentity at 4:56 PM on November 27, 2017 [118 favorites]

Weirdly, while I was pregnant with my first I too was told "no news is good news" and was only told what was, in fact, bad news, because I chased down the results. In my case it was a much less big deal (gestational diabetes) but it is absolutely a stupid policy to tell patients no news is good news. I know why they do it, but it absolutely results in worse health outcomes.

I wouldn't wish what this family has been through in anyone, and I hope she takes her doctor to the cleaners.
posted by potrzebie at 5:08 PM on November 27, 2017 [13 favorites]

This woman could be my mom.

I didn't have any genetic disorders (though perhaps some genetic shortcomings will apparent in another decade or so) but my mother had three boys, the first a bit Catholicly earlier than nine months after the honeymoon, an absent minded husband, both in terms of forgetfulness and presence, and horribly insulting and abusive inlaws. She had an awful ride and it certainly didn't make her kind. She has never hesitated, in the brutal way of my family which was largely shaped by her, to say what she would do differently if she could do it all over again. Her marriage and her children would not exist.

I wasn't chosen. Yet I wasn't unloved. And I totally get the remorse of a life not chosen.
posted by srboisvert at 6:17 PM on November 27, 2017 [6 favorites]

When we received the results of my daughter's labour-gone-wrong brain damage, we had a whole team of professionals explain to us what they knew, what her prognosis was for survival...and what her prognosis was if she were to survive. I cannot say that her father's and my decision was an easy one, and I cannot say that it does not haunt me as we did take her off the respirator and she did die. But I can say that the support of the medical team, their clarity and their willingness to order tests, and answer our questions, and not just trust to fate or whatever provided profound support at what was an incredibly bad time.

In contrast, the hospital where my daughter's birth injuries took place basically did just that, obscuring what they knew and in fact, losing records very similarly, creating all kinds of doubt and questions.

I get this mother's anger. I totally understand how she can love her child, be going to bat for her child every day, and still be absolutely devastated at the failure of her midwives' care. Good for her for fighting, and sharing her fight.
posted by warriorqueen at 6:17 PM on November 27, 2017 [82 favorites]

I am not going to delve deeply into this because this is still something that haunts me. But I did terminate a pregnancy with a neural tube defect, then chose to keep one with a chromosome disorder.

I asked the doctor if my child would be in pain, and he said no. So I chose to go forward, never thinking there are greater things than just pain, and that I decided unilaterally for my child to suffer in other ways.

I am mad crazy wildly in love with my daughter, and I also agonize at night about the choice I made for her before she could make a choice.

My hat's off to this mom, who was brave enough to write about that and expose herself to a response that I know will NOT be universally charitable.
posted by headspace at 6:36 PM on November 27, 2017 [65 favorites]

My parents had four children. The eldest three were born with a genetic mutation, a neurodegenerative disease resulting in severe disability. They initially weren't expected to live past their teens but all three beat the odds, for a while. Chris died at 26, Brian at just past 30, David in his 41st year. All three spent their lives entirely dependent on my parents and me. I was the fourth child, abnormal in my relative normality, having inherited the other side of the coin flip, the recessive gene.

My parents were strictly religious so an abortion would probably have been out of the question, but I sometimes wonder what they would have done differently, if they had known. Probably I wouldn't exist at least -- who in their right mind would take that chance a fourth time, let alone second or third? We don't talk anymore so I don't suppose I'll ever know, but I wonder.

Chris had some cognitive issues and I'm not sure whether he ever really grasped his situation. David was a better man than I'll ever be; somehow he found solace in faith and made peace with his condition. But Brian... Brian haunts me. He knew what was happening to him and he didn't understand why. I mean, he understood why-the-mechanics-of-what-happened, after a fashion, but I don't think he ever understood why is this happening to me, and no one could give him an answer that made him satisfied. He watched and felt his body betray him and he understood that it had to be so, but he was confused and afraid. And he was angry, so angry sometimes, as he had every right to be. He'd had a few years of walking before his coordination failed and robbed him of the rest of his childhood, he watched his horizons shrink and his future fade away. I loved him, not as well as I could or should have (because I was the idiot little brother who took little things like being able to climb a tree or ride a bike for granted, and was never as understanding and supportive as I should have been), but I saw that he was unhappy and tried to add some joy to balance out the pain. My parents tried as well of course. I honestly don't know if it was enough. Brian just did not have a good life. Twenty years later he still haunts me and I expect he always will.

I don't know whether my parents would have done anything differently if they had more information earlier, or if they even felt like they could have changed anything. Probably they'd fall under that category of parent described in the article, gracefully accepting God's will (for some certain values of 'gracefully', at least). Me, my eyes are wide open. I've done the testing, I know that I'm carrying the same broken genes, and I've given up on the idea of having children. I can't take that risk, not if there's the slightest chance that I'd give another child a life like the one Brian had. Choosing to not have children, or choosing to abort a child whose painful fate is already written -- they're both heartbreaking choices that no one should ever have to make, the second considerably more so than the first, but at least it's an informed choice. Maybe a better person than me would go ahead and take a chance, trusting in their ability to love their child enough to overcome any obstacle and fill their lives with enough joy to balance out any pain. But I've seen that life up close and I would not wish it on anyone I loved, not while it could still be avoided.
posted by Two unicycles and some duct tape at 6:46 PM on November 27, 2017 [119 favorites]

I think I heard some kind of interview about this on the radio this weekend; some news magazine piece based on it. They spoke with a mother whose child had cystic fibrosis, and who wished she could have terminated the pregnancy and felt uneasy about that.

And then a man called in to say that he'd had that conversation with his mother - about himself. He had cystic fibrosis, and at one point he and his mother talked about his conception and gestation and his mother let slip that she'd considered aborting him. "And honestly," he said, "I am okay knowing that, becuase I know what the motivation was behind it." He was grateful to be aive, but the cystic fibrosis was a serious burden, and.... and he knew what his mother meant by it, and was okay.
posted by EmpressCallipygos at 6:47 PM on November 27, 2017 [24 favorites]

I've made a similar choice, Two unicycles.

I will never have biological children, ever. My family history is so full of dead children dying in ways that science still can't prevent, can only delay, and I just won't do it. If I ever am pregnant, it's an abortion for me by whatever means necessary. No doubt about it. I refuse to condemn a child, two or four or six or eight -- the oldest was twelve -- to a death of bulging organs and infinitely greedy tumours and the shambling loss of self that comes with progressive brain damage and organ failures. If I was somehow forced to have a child, I would murder it at the first opportunity without regret.

I refuse to inflict a torturous death on a child. If that makes me a terrible person, so be it.
posted by E. Whitehall at 7:00 PM on November 27, 2017 [40 favorites]

I didn't know it when I was pregnant, but I'm a CF carrier. I'm glad my kid plans to adopt.
posted by Ruki at 7:34 PM on November 27, 2017 [5 favorites]

I stand in awe of you, you MeFites who trust us enough to tell your stories. Thank you.
posted by workerant at 7:38 PM on November 27, 2017 [124 favorites]

workerant said it before I could. Thank you for sharing your stories and your hard-earned wisdom and perspective.
posted by salvia at 8:26 PM on November 27, 2017 [6 favorites]

I love this community. I love the people who make up this community.
posted by SecretAgentSockpuppet at 8:47 PM on November 27, 2017 [32 favorites]

“But,” she said, trying to figure out what it would mean to sue over a disease that can’t be prevented or fixed, “if you had known — ” I interrupted her, wanting to rush ahead but promptly bursting into tears when I said it: “There would be no Dudley.”

No, Dudley would have been born later, and healthier.
posted by explosion at 9:05 PM on November 27, 2017 [9 favorites]

This is the first time I've read something that so eloquently expresses the way I think about my own reproductive choices. I've got bad genes lurking in my near and distant family, and myself have a genetic condition with a 50% chance of passing it on. While my condition is insanely mild compared to the heartbreaks other suffer, it has still caused me deep pain. My parents couldn't have known this in the cards, I was a spontaneous mutation, so I don't blame anyone for it. It just is. But I deeply struggle with the idea of knowingly signing up my kid for the pain I can guarantee they'd be in for. How could I look my child in the eye, knowing I caused such pain and trauma? The author's description of a "biological remorse" so perfectly encapsulates my feelings that I can't believe I've never run across it before.

Plenty of people with my condition choose to have children, and that is totally fine. I'm sure growing up with a parent to guide you through the journey makes it less isolating and terrifying than facing it alone like I did. Maybe that's why my friends and family keep insisting that I'm overreacting, that it's not that bad, that you never know what kinds of problems your child might have, and every child has their own problems so don't let that stop you, and anyways your kids won't be any worse of than you and you came out fine. They don't seem ever seem to grasp, or maybe I just can't convey, my absolute horror at knowing I am a child up for an especially hard life. Biological remorse indeed.

I saw the movie Arrival last year, which sent me into a bad tailspin for awhile. It was a really great movie and all, but--SPOILER ALERT--the main character effectively makes the opposite choice on this matter than I would... or I guess I already have. Perhaps the decision to move forward really is the nobler one, I don't know. But it is so heartening to read this article, and the stories of others on this site, who get it. I haven't ever heard from people whose calculus works out the same as my own. It's nice. Thank you.
posted by lilac girl at 9:15 PM on November 27, 2017 [14 favorites]

Thank you all for sharing your stories with us.
posted by smoke at 10:01 PM on November 27, 2017 [3 favorites]

I've a friend who has a child with CF, and she wants a second child: but a 25% chance that the second child would also be born with CF is too much. CF sufferers can cross-infect one another with lung infections and keeping them in closer proximity to one another is a death sentence.

She's been offered pre-natal testing so that she'll know in plenty of time to terminate... but she lives in a place with highly-regressive abortion laws, so she'll have to travel to abort a future kid, if it came down to that. What kind of country will let you be tested to find out if your unborn child has CF but won't let you do anything about it?!
posted by avapoet at 10:53 PM on November 27, 2017 [14 favorites]

For those who are interested in reading more about raising children with disabilities, I can never recommend Far From the Tree by Andrew Solomon enough. It's a huge book that is at times very difficult to read, but I honestly can't think of another book that was more mind opening and has had more of an impact on my everyday behaviors and interactions than this one.
posted by telegraph at 3:16 AM on November 28, 2017 [5 favorites]

No, Dudley would have been born later, and healthier.

I feel like the point is that Dudley specifically wouldn't have been born. They would have had another child with a different random combination of their genes (and who wouldn't be growing up affected by a chronic medical condition needing daily medical treatments which in itself may already be affecting his personality).

They would have loved that child and had a very different life. If you want to get really abstractly philosophical then Dudley's missed prenatal diagnosis denied that child their chance to exist). And there's a possibility that the other child might have had it's own medical or other issues that weren't detectable as a prenatal diagnosis but then we're really off down the rabbit hole of unknowns.

Unrelated to this story I had a big discussion with a friend who had a significant pre-natal diagnosis and about how that worked out. Her perspective was that the decisions are incredibly individual but that what parents need above all is clear information about what the available options are and the likely outcomes so they can make the right choice (which she got but had to really fight for as the first team who broke the news were trying to book her for a termination without even discussing other options, something that made her very angry indeed).
posted by *becca* at 6:00 AM on November 28, 2017 [12 favorites]

I was on the other end of this with dire false positives, coming within a hairs breath of terminating a pregnancy. We had lost a previous pregnancy to chromosomal abnormalities resulting in miscarriage, so being told point blank to our faces that this kid wasn't going to make it was devastating.

Had a family friend not been one of the world's best doctors in this field at Brigham and Women's in Boston and convinced us to come in, I don't think we would have gone forward. But we did go in, new battery of tests and it was nothing. Nothing. It was a misread test combined with lower quality ultrasound equipment at the country hospital.

It was an experience that sowed a great deal of mistrust in medical interactions. Especially involving my kids. I can empathize with both the extreme love for one's child and extreme sense of betrayal of her story.
posted by French Fry at 6:14 AM on November 28, 2017 [6 favorites]

Like Two unicycles I have a sibling with with profound disabilities and I would never wish that life for anyone. She will never be able to be alone, or travel, or read novels. She has no friends and will probably never have a romantic relationship. Her life is good in some ways, but she's not happy, and she knows exactly what she's missing out on.

And me? And my parents? As a kid I imagined, every day, what kind of life I would have without her. I could have friends over and just play with them, not have to awkwardly explain anything...Maybe my parents would have taken me on a vacation instead of spending all of their money on medical treatments. Maybe they could have bought a house. Maybe they would have spent more time with me, instead of always being at the doctor's office and then watching TV because they were so exhausted.

Where will she live when they die? Can I afford assisted living for her? Will she live with me (and ruin my life too)? It's not a terminal illness, so it's likely we will be in this together for the rest of our lives. I love her, I love her so much, but that doesn't mean I want to take care of her. The thought of spending the next 60 years taking care of her, instead of living my own life, is a shuddering horror.

I love my child just the way he is works well if you are just unlucky, blessed with any of the millions of things that can go wrong that we can't screen for or prevent. But to knowingly create a person with cystic fibrosis, sickle cell anemia, a neural tube disorder, or any of the other things we can screen for? I can't accept that.
posted by epanalepsis at 6:44 AM on November 28, 2017 [21 favorites]

Gah, a tough case. I am always torn about these situations because I work with people with disabilities, some of them incredibly, incredibly severe, but also incredibly, incredibly amazing, and I empathize with both wanting to choose to not have a disabled child and the argument that that choice is ableist and robs the world of a lot of incredible people. So many of the stories I hear from families are horrible - people telling them they should have aborted, how dare they, or, perhaps worse, how sorry they are for them to have this terrible burden - that side of the coin is heartbreaking also.

But to knowingly create a person with cystic fibrosis, sickle cell anemia, a neural tube disorder, or any of the other things we can screen for? I can't accept that.

It's interesting; there have been a number of cases now where parents select for a "disability" for their child, largely in communities who argue for disability as difference/social construct.

I don't know what the right answer is. Obviously this case is egregious at least insofar as the hospital fucked up, and I do like the idea of suing for money to put in a trust for Dudley. But this is a tremendously complicated issue.

I’m afraid of what he might want from me someday, of the kinds of questions he’ll want answered. He’s not dumb: He’ll figure out that his disease should have been detected before he was born, not after.

This does bring up the interesting legal situation of this case. The parents are suing for wrongful birth, but part of me also wonders, now that the child actually exists, if it ought to be the child making the choice to take legal action at some point, when he can - wrongful life suits are rare but increasing in numbers.
posted by Lutoslawski at 7:42 AM on November 28, 2017 [2 favorites]

It's interesting; there have been a number of cases now where parents select for a "disability" for their child, largely in communities who argue for disability as difference/social construct.

That is interesting. How economically privileged are these families, generally?
posted by epanalepsis at 7:47 AM on November 28, 2017 [2 favorites]

That is interesting. How economically privileged are these families, generally?

I don't know, but privileged enough for IVF + all the optional genetic testing. So probably relatively high on the privileged scale, I imagine.
posted by Lutoslawski at 7:53 AM on November 28, 2017 [1 favorite]

It's interesting; there have been a number of cases now where parents select for a "disability" for their child, largely in communities who argue for disability as difference/social construct.

This angers me so, so much. SOCIETY is a social construct, the ultimate construct, and it is unfailing brutal to anyone who falls too far outside of the "average" of any bell curve applied to it. Too tall or short? Too fat or too thin? IQ too high or too low? Lack one or more of the basic abilities, senses, or limbs that the majority of designers create for, you are basically screwed. You might be screwed in a few big obvious ways or a million tiny little ones, but you'll still feel that otherness and pain in some way.

Sure, having a robust community of others who are in the same boat helps, but I can't wrap my head around any parental view that doesn't want your children to have even more, and better options in life than you had.

I've got my next OB/GYN appt in a couple days, and It'll be the one where I have blood drawn for my genetic testing. The thought that something might be wrong, terrifies me. I am already very attached to my Podling, but if going forward would mean a life filled with pain and mental anguish for them, I don't know how I could do that too them.
posted by sharp pointy objects at 8:10 AM on November 28, 2017 [5 favorites]

I think something like Deaf parents wanting to have a child who's also Deaf is very different from something like CF where there's pain, struggles to breathe, seriously-shortened-lifespan, etc, or conditions like the daughter who had rubella in utero has, where she needs lifelong 24 hour care and can never have any meaningful self-determination. I don't think that throwing all "disabilities" into the same bucket is necessarily illuminating here, I think it's likely to drag us off-course into discussing a very different kind of case.
posted by LobsterMitten at 8:23 AM on November 28, 2017 [28 favorites]

It's interesting; there have been a number of cases now where parents select for a "disability" for their child, largely in communities who argue for disability as difference/social construct.

This is a dogwhistle for the Deaf community, isn't it? Like LobsterMitten says, it's a very different situation and many Deaf people would not describe themselves as disabled or their lives as "lesser than." I'm hard of hearing, not Deaf, but if I were immersed in that culture I could understand wanting to have a child who is also part of that culture. I don't see it as that different from a Black family choosing to have a Black child (if that were possible). Yes, it may introduce additional challenges to your life. But being the outlier in your own minority community might be worse. It's hard to say.
posted by AFABulous at 9:02 AM on November 28, 2017 [10 favorites]

This does bring up the interesting legal situation of this case. The parents are suing for wrongful birth, but part of me also wonders, now that the child actually exists, if it ought to be the child making the choice to take legal action at some point, when he can

It's very much NOT a given that he will live to be an adult, and if he does, he'll be spending a lot of his time and energy on surviving to the next day. This is a situation where it's completely appropriate for the parents to act now.
posted by The Underpants Monster at 9:04 AM on November 28, 2017 [10 favorites]

I can never recommend Far From the Tree by Andrew Solomon enough

This was a very thought-provoking book on a number of axes, but I couldn't help but notice how often his family stories concluded with the ultimate moral of "you can get used to any sort of situation in your family and so ultimately be happy regardless." I didn't doubt the words of the parents of really profoundly disabled children who said they wouldn't have it any other way--but I wondered if he was really well-positioned to reach those parents who did wish they'd been able to terminate, who did feel that their lives were ruined or hopelessly diminished by the extraordinary needs of their very severely disabled child. How hard must it be for any parent to admit that to anyone, much less a researcher?

There's a blogger who writes beautifully about her child born with severe developmental delays and frequent seizures--a child who will not only never be capable of caring for himself on the most basic levels, but will always suffer horribly from these seizures that he can't even begin to understand the cause of. She is very honest about the emotional challenges involved, both her deep love for her child and the anger, fear, and pain of a lifetime of caregiving for someone who is suffering. I have sometimes wondered if, in prolonging his life, modern medical science has really done right by him or his family. Intellectual limitations are one thing, but combined with the constant crisis and pain of the seizures and their associated conditions...I just don't know. You can't have enough sympathy or respect for people struggling with these issues.
posted by praemunire at 9:51 AM on November 28, 2017 [6 favorites]

I am always torn about these situations because I work with people with disabilities, some of them incredibly, incredibly severe, but also incredibly, incredibly amazing, and I empathize with both wanting to choose to not have a disabled child and the argument that that choice is ableist and robs the world of a lot of incredible people. So many of the stories I hear from families are horrible - people telling them they should have aborted, how dare they, or, perhaps worse, how sorry they are for them to have this terrible burden - that side of the coin is heartbreaking also.

I think it's important to remember that at the end of the day, Gann is not angry because "omigod I had a kid with cystic fibrosis". She is angry because she was not given the opportunity to decide ahead of time whether she wanted to have a kid with cystic fibrosis. She was not informed of the genetic testing results for her and her husband; so she was not able to make an informed decision.

If she had been told of the certainty that Dudley would have CF, she very well might have gone ahead with an abortion; but it's also possible that she would have had a last-minute change of heart and gone ahead. Whether or not Dudley would have been born isn't her point as such; or at least, it's not her only point. Her point was that she wasn't even given the opportunity to make that decision because she wasn't told it was a decision she would have to make in the first place.

Families should indeed be able to decide what is best for their unborn children, and families will differ in their definition of what "best" means. But I think we can all agree that before each family makes their decision, they should be informed about what those decisions even are.
posted by EmpressCallipygos at 10:21 AM on November 28, 2017 [19 favorites]

I’m horrified by the sanctimony that often accompanies this acceptance, especially when it’s admired, especially when it’s offered up by mothers who don’t “believe” in prenatal testing or who have more than one child with cystic fibrosis.

I'm the father of premature twins. One died after a month of life. The other is doing pretty much great at 7. Our two months in the neonatal intensive care unit (NICU) and the early years when my daughter was very sick are by far the darkest time in my life. I wouldn't wish that suffering on anyone.

In the NICU, you meet all kinds of parents. One mom was in there with her ninth kid, a 28-weeker. It was her fourth time being medevacced across the state to the NICU in Seattle. I don't know what it was that made her kids come prematurely, but at least partly for religious reasons she kept choosing to have them, at what must have been a cumulative cost of millions of dollars and an unimaginable toll on her family.

If I'd known what was coming in time and if the decision had been up to me (I'm male, so it wouldn't and shouldn't have been), I would certainly have aborted our pregnancy and in all probability had a single healthy child a year or two later. To watch someone choose to keep going back to the NICU, to take on all this suffering and risk, not just for themselves but for the kids she kept bringing into the world, made me ill and angry. As does the sanctimony of pro-lifers who assert that up is down and day is night and using abortion to prevent unimaginable suffering is immoral.
posted by gurple at 10:40 AM on November 28, 2017 [12 favorites]

It's not only advancements in genetic testing that are changing the ethical landscape - it's the drop in birth rate. The developed world is really only a few generations removed from a time where the dominant reproductive strategy was "have as many children as possible and hope most of them survive". Suddenly we have birth control, and a society where parents aren't as dependent on their children in old age - I don't have a citation but I would assume a majority of people choose how many children to have and then stop.

My parents had two children. I don't see why I should be horrified by the prospect of me not existing if it meant that my hypothetical third sibling had the opportunity to exist instead. It's different if the circumstances make it impossible for the parents to keep trying, but even if they have to try repeatedly to overcome the odds...are the aborted potential children morally different from all the subsequent potential children that are never conceived? (I'm not saying this question has an obvious or easy answer.)
posted by allegedly at 10:43 AM on November 28, 2017 [2 favorites]

At least one person with CF didn't feel all that great about the article. I don't have a sense of the full spectrum of views on this very sensitive and difficult topic among people with CF, but I do think it's important not to get carried away with the 'quality of life' stuff - people with CF have a very hard time, but they can also have meaningful, satisfying lives, and the prognosis is markedly better than it used to be and is still improving.
posted by Acheman at 11:54 AM on November 28, 2017 [5 favorites]

None of which, of course, means that a person shouldn't have a 100% right to choose whether to go ahead with a pregnancy, and to be given all the information they feel they need to inform that decision. The issue is how to write about people who are disabled, including those with life-limiting conditions.
posted by Acheman at 11:57 AM on November 28, 2017

Yeah, it's a weirdly compromised kind of rhetorical situation the author's writing from, where this article will inevitably be introduced as evidence in her lawsuit, and so she needs to make it sound like "this disease is so bad it makes life almost not worth living", for the purpose of the lawsuit, even if that's an oversimplification and unfair to the actual life experiences of people with CF.
posted by LobsterMitten at 12:02 PM on November 28, 2017 [2 favorites]

i didn't know that the genes for CF were that common and i'm pretty sure neither me or my ex were tested for that

i don't think they have one for autism either

sometimes you end up taking what you're given, even if it means it's for the rest of your life - i don't think i would have wanted abortion, but as a man, it's not up to me - i wonder if my ex would have, but she walked away from my kid when she turned 18, so i can't ask her

i'm personally acquainted with an autistic kid who is in much worse shape than my daughter, so ...

i don't have any answers - not even questions - just a 21 year old who has an 11 year old mind and difficulty understanding things
posted by pyramid termite at 1:02 PM on November 28, 2017 [1 favorite]

This is why Roe v. Wade is important. This is why safe abortion available in every state is important. This is why choice is important, rather than legislating a series of capricious and politically-motivated hoops to jump through.
Because you never know... until you know. And no one has the right to make these decisions other than the person who is pregnant, based on what she knows, and what she can deal with at the time.
Leaving this up to strangers is a roll of the dice. And that is not enough to base several lives upon.
posted by TrishaU at 1:31 PM on November 28, 2017 [10 favorites]

I'm guessing the calculus would change for at least some conditions if people were assured they would have adequate medical care and coverage for the rest of the child's life. I can't imagine having to care for a child around the clock, plus have your financial future destroyed due to medical bills.
posted by AFABulous at 2:45 PM on November 28, 2017 [14 favorites]

and robs the world of a lot of incredible people.

Women who choose not to bodily make and bear children rob nobody of anything.

I realize it is a metaphor, albeit a vicious metaphor. and I realize it is an argument you were quoting/characterizing, not making yourself. but you don't fight ableism with misogyny, and there is no non-misogynist way to characterize a pregnancy carried to term as the payment of a debt owed to the world. people-as-commodities is also a characteristically ablist way to talk about people with disabilities. they don't have to be "incredible" any more than they have to be inspirational, to justify existing; once they're born, they have the same regular old rights and freedoms and responsibilities as anyone else. being incredible is not one of those responsibilities.

but fetuses are not people with disabilities. some of them will be, some of them would have been, some of them might have been. none of them are.
posted by queenofbithynia at 4:57 PM on November 28, 2017 [36 favorites]

> I'm guessing the calculus would change for at least some conditions if people were assured they would have adequate medical care and coverage for the rest of the child's life

I agree; it's similar to "right to die" issues for people with severe disabilities, when their suffering could be lessened if they had proper health care, the support they need, and income to live with dignity. Part of why "pro life" is such a ridiculous name for politicians who refuse to invest in the lives of people who need additional support.
posted by The corpse in the library at 5:26 PM on November 28, 2017 [3 favorites]

Let me add one more point that the writer did not mention, because in all likelihood it will not factor into her family's decisions: what do you do when your child outlives you?
That is a sobering thought I've seen in action. And all the preparations in the world do not count for a thing if the people, the resources, and the child's evolving health do not track to a desired outcome.
I've seen marriages fail, siblings (the intended future caregivers) walk away, financial plans whittled to nothing as time marches on and long-term care costs increase.
Some things you can't plan for, and the weight of that responsibility is shattering.
posted by TrishaU at 8:03 PM on November 28, 2017 [6 favorites]

>I'm guessing the calculus would change for at least some conditions if people were assured they would have adequate medical care and coverage for the rest of the child's life

Yup. I think about this in the context of my husband’s family caregiving for his dad, who is dialysis-dependent, paralyzed from the chest down, and requires 24-hour care. My husband says “You do what you have to do for the person you love. Of course you do. But it takes a toll.” That toll has included hits to his health, to his mom’s health, to his parents’ modest savings, to our marriage (because we basically didn’t see much of each other for a year), to my relationship with his mom (we fought over her refusal to seek options that didn’t involve my husband spending every non-work waking hour as unpaid caregiver — there’s no guarantee any other options would have been feasible, but she wouldn’t even try talking to a lawyer).

That experience terrifies me when it comes to the possibility of being trapped in a situation like that for the rest of my life as a parent. I hate it because it sounds so disgustingly ableist — like I just see people with disabilities as burdens. I find that implication awful.

And yet, the current total lack of safety net means that caregiving for someone who needs that level of care can be pretty damn hellish — despite how wonderful and greatly loved the person is. There is simply no support, no help is coming, and you have to do an impossible amount of work because there is no alternative. Insurance doesn’t cover long-term care. Medicaid may cover some care, but to qualify, the whole family has to be dirt-poor to the level of not being able to buy groceries — there cannot be any financial stability, no matter what, unless you started out beyond filthy rich. Even respite care is totally unaffordable on a middle-class salary once someone needs a certain level of care. You are in constant crisis mode for years on end and it doesn’t get better, ever. How can this be something that people are just … expected to do?
posted by snowmentality at 2:50 PM on December 1, 2017 [6 favorites]

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