I know some of you don’t care for Slate, but this deserves to be shared. Emily Rapp disagrees with Rick Santorum:
… If I had known Ronan had Tay-Sachs (I met with two genetic counselors and had every standard prenatal test available to me, including the one for Tay-Sachs, which did not detect my rare mutation, and therefore I waived the test at my CVS procedure), I would have found out what the disease meant for my then unborn child; I would have talked to parents who are raising (and burying) children with this disease, and then I would have had an abortion. Without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision. I’m so grateful that Ronan is my child. I also wish he’d never been born; no person should suffer in this way—daily seizures, blindness, lack of movement, inability to swallow, a devastated brain—with no hope for a cure. Both of these statements are categorically true; neither one is mutually exclusive.
Persia
When I was pregnant, they offered me screening and I said no, and I still think I made the right choice. But I wasn’t in any risk groups and that ‘choice’ word, that’s the key. I wouldn’t wish Tay-Sachs on my worst enemies, or their children.
Original Lee
Very true. When I worked in a chemical research lab, I knew I might have to abort if I got pregnant, because of the mutagens I was studying.
mai naem
I am so sick and tired of these “pro-life” prigs. I say gettf in line and line up to adopt some severely disabled kid. And I don’t mean just some Down’s Syndrome kid who will very possibly be able to live on their own. No, I am talking about some kid with severe cerebal palsy where they are non-verbal except for grunts and cries. A kid who you will be changing diapers for even when they are thirty seven. The kid who you will be at the hospital with every year because his feeding tube got infected or he gets pneumonia or he breaks his hip/knee/leg because of his disease process. No, none of these pigs want to do that. Furthermore, they don’t want to provide services for them, unless its their child i.e Sarah Palin who was busy vetoing money for developmentally disabled kids before her precious Tripp(or is it Ttttrigger?) was born.
Steve
If one of my kids had received a prenatal Down’s Syndrome diagnosis, we wouldn’t have considered abortion. But something as serious as Tay-Sachs would be a different story. My heart breaks for these kids and their families.
Mnemosyne
This is what I realized about Rick Santorum today: he is so insecure in his family’s decision to not abort a fetus with trisomy 18 that he wants the law to ensure that no one else is allowed to choose otherwise and thus invalidate their decision.
It’s a perfectly valid decision to continue a pregnancy even when you know the child will have trisomy 18, or Down Syndrome, or Tay-Sachs. What’s despicable is taking that decision away from people and mandating that they must go through with the pregnancy no matter what.
I think I’ve mentioned this before, but my mother was strongly advised to have an abortion when she was pregnant with me, because her breast cancer had re-occurred and she wasn’t even 30 yet. She refused and had me anyway, and she died of that cancer when I was 7.
I at least have the comfort of knowing that she made a free choice, knowing what the consequences would be. I can’t even imagine how horrible it would be to know that she was forced to have me because some faceless bureaucrat decided that my embryonic life was more important than hers.
Bubblegum Tate
I don’t even want to know what kind of wingnut hate mail she’s about to get. Ugh.
Jimbo316
@mai naem: Excellent post. It’s the long-term costs and the long-term suffering that these brutalians don’t care about in their rigid ideological stance.
pragmatism
oh no silly, that is the wrong sort of informed consent. you gotta play the hand God dealt ya. my religious freedom is more important that your freedoms. yadda yadda.
my wife and i had to go through all sorts of tests due to a risk factor for batten’s disease. my family member who dealt with a batten’s afflicted son who passed away offered to pay for the tests and gave us his honest opinion on what he would have done if he had known. i really respect him for that. thankfully it all worked out for us.
Gentle reader
I had amnio with my second kid, since there were risk factors and higher chance of abnormalities. We knew that there were certain diseases and conditions that would cause us not to proceed with the pregnancy.
I get really mad at those who want to take that choice away from families.
PeakVT
@Mnemosyne: That might be why Santorum is fired up about the issues right now, but I believe he was anti-abortion and anti-contraception before his daughter was born.
jeff
I’m staunchly pro-choice, but I do understand some of the difficulties at the margins. . .
My old roommate, who is a great guy and always a close friend once told me that he would abort if prenatal testing could show the fetus was probably going to be gay. I was so fucking floored that we didn’t speak for a while.
I don’t think of my existence as a mistake that might be prevented with better science in the future.
But, again, these concerns are mostly about future problems, not current ones. I don’t want to confuse the current issue with slippery-slope or “what-if” scenarios. But it does very seriously freak me out that people would rather abort than have a child that is different, not just physically suffering.
aimai
I have friends who had an unexpected Tay Sachs baby. No known history of ethnic risk so they hadn’t had the test (I did). They discovered that their baby had the disease just slightly before the disease manifested itself because by horrible chance their nephew also had it and was diagnosed right after they had their baby. Both children died, of course. Horribly.
Here’s the other thing about prenatal testing. A) Most people who get a downs diagnosis do choose to abort. But because downs is not assigned primarily to liberal/pro choice parents what that means is that when push comes to shove a whole lot of theoretically religious/anti abortio people choose to abort.
B) prenatal testing is invaluable if you don’t choose to terminate. If the baby is going to be born with a major health problem or physical defect its good if the medical staff in attendance at the birth know it in advance. Eliminating pre-natal testing should, of course, extend to ultrasounds themselves because in Santorum’s view we shouldn’t be trusted with any information about the fetus/baby lest we have opinions. But all that information has led to healthier and safer births for wanted babies.
As a mother and as the mother of two daughters I wish someone would develop a neutron bomb that would take out only the conservative women haters and leave the rest of us in peace.
aimai
John M. Burt
How DARE she!
Who does she think she is?
Mnemosyne
@PeakVT:
Yes, he was already “pro-life,” but it’s easy to be “pro-life” when you never actually have to think about it. Now his faith has been tested and (IMO) found wanting, so he wants the security of knowing that no one else can ever make a different decision than they did. He’s not content knowing that they did what they felt was right for their family — he needs validation from the culture at large that they were Totally Completely 100 Percent Right, Always.
ETA: Am I saying that people who become fundamentalists are insecure people who need constant validation that they’re making the right decisions? Is the Pope Catholic?
chopper
ugh. when we got pregnant it turned out that my wife tested positive as a carrier for something similar. I didn’t but she was sweating it while we waited for my results (I wasn’t worried.). the idea of delivering a child just to watch him or her suffer and die by age 2 or 3 is just horrifying.
THE
I loathe these bossy, meddlesome, iron age cults.
If you aren’t raising the child, you don’t need a say in it.
Not even interested in their problems with it.
Ain’t real. None of it.
Bubblegum Tate
@chopper:
Or, as Rick Santorum would describe it, “a gift from God.”
What a despicable asshole he is.
rikyrah
it is her CHOICE.
it should be the woman’s CHOICE
SiubhanDuinne
@rikyrah:
Exactly. Rih and Karen CHOSE to have their Trisomy 18 daughter Isabella; Sarah and Todd CHOSE to have Trig. In fact, they’ve both used that word — I think they have, I know Sarah did. CHOOSE. CHOICE. That’s all we’re asking. Your choice might not be our choice, but we respect you for making the choice that was right for you. What’s so hard about this?
SiubhanDuinne
@chopper:
It is to me. But even more horrifying is the idea — which is usually thrown out there as a red herring straw man — that the state would force you to abort such a child.
I know what my own decision would be, no hesitation for even a heartbeat. However, I’m not going to criticize the Santora for making a different decision. That’s what being pro-choice means. (Awfully sorry for the child, though. Poor Isabella for her selfish self-righteous parents.)
Mnemosyne
@SiubhanDuinne:
And you know it’s a red herring, because if you say, “So what’s the difference between the government mandating an abortion and the government mandating that the woman continue the pregnancy?” the answer is usually something like, “Because BAYBEEZ and shut up, that’s why.”
trollhattan
Damn, that story is crushing. Good for Ms. Rapp for writing it, she and her family have my sympathies and respect.
Pray tell, what was the induced birth and subsequent death of the Santorum child if not a type of abortion, based on medical insight not available “back in the day”?
I really, really want somebody to ask him this in a public forum. Soon.
aimai
@SiubhanDuinne:
Is this some kind of a joke? There has never been any attempt by the US state to force people to abort babies because of birth defects. There has, of course, been a concerted attempt to prevent poor women, or black women, or women on government assitance, or women who were labled as promiscuous or crazy to be sterilized.
There is also a near total indifference to the crippling social, emotional, and financial costs of raising special needs children or of helping their families handle the fact that those children now can live long lives but need constant caretaking.
Whatever is done to women and the fetuses they carry it is never done in the best interests of the child or we’d have an utterly different environment for the raising of children.
aimai
PurpleGirl
@Mnemosyne: They don’t want to make decisions. That’s why they want rigid rules which restrict their choices and narrow their range of decisions.
Linnaeus
There’s a professor in my department who would say that Emily Rapp is arguing for “eugenics”. Which shows he doesn’t understand what eugenics is.
Mnemosyne
@PurpleGirl:
Not to start paraphrasing Rush (the band, not the radio jerk), but choosing to follow a rigid ideology is still a choice, and it nags at them that other people are living their lives differently. That’s why they want to take the ability to choose away from everyone else — then their own choice to live by those rigid rules will be validated.
ETA: This is all IMO, of course, but it does often seem to me that fundamentalists, like narcissists, are often trying to cover up a bottomless well of insecurity with their behavior.
Gus
As the father of a nine month old, I find that article absolutely heartbreaking. I can’t imagine the pain.
robuzo
“I’m so grateful that Ronan is my child. I also wish he’d never been born; no person should suffer in this way—daily seizures, blindness, lack of movement, inability to swallow, a devastated brain—with no hope for a cure. Both of these statements are categorically true; neither one is mutually exclusive.” Of course, asking a religious fanatic to hold opposing ideas at the same time and still function is a bit much. Along with wisdom, real compassion also seems beyond these “Christians,” so in addition to being stupid they are hypocrites.
tokyo ex-pat
My first pregnancy was diagnosed as anencephaly. We were 17 weeks when we had the ultrasound that indicated the possibility. We went back the following week for another ultrasound and a second doctor’s opinion. The following week I was in the hospital undergoing an induced birth for termination. Fortunately, I was in Japan. Treated with total dignity and respect. It was heartbreaking and traumatic but it was a decision my husband and I made in consultation with our doctor. I don’t regret it at all. Six months after the termination I was pregnant and I now have three healthy boys.
My mom’s friends (all Catholic, two former nurses) wrote during that time that stuff like this happened and God was there for us and understood. They must have been praying to a different God than Santorum.
I really wonder what Santorum’s wife would say if she could speak freely.
JCT
@chopper:
Especially when there are completely legal options that could completely prevent such suffering should the parents choose to take advantage of them — but according to Rick and his ilk, these options should disappear.
Horrifying in this case is an understatement.
bmaccnm
@tokyo ex-pat: My daughter, my first child, had an undiagnosed anencephaly. That means that while I was in labor with her, I didn’t know that she didn’t have a brain. I held her for twenty minutes while she struggled and died. It took me six years to be able to say “I had a daughter.” That experience did’t make me a better person. That experience left me suicidally depressed for years. I am now a midwife, and I have nothing to say about the choices my patients make- I only have information to help them facilitate their choices. The folks who say “But it’s a Baybee” can go fuck themselves. They truly have NOTHING to say about the agonizing choices others must make, or the lives that other innocent babies might have to lead.
rb
@bmaccnm: I’m sorry you went through that. Thank you for sharing it.
tokyo ex-pat
@bmaccnm: I was very lucky to be diagnosed at such an early stage. I consider myself a fairly strong person, but I could not imagine carrying to term, knowing there was no hope for this baby. I didn’t want to. Either way the baby died, so why drag it out? I still grieved after and it was really hard to be around people with new babies.
It really pisses me off when people talk about abortion as a lifestyle choice. There are so many people for who it’s the only choice for reasons that don’t deserved to be dissected.
Honestly, I am watching what is happening in America and it scares me.
Darkrose
All of the stories here, and in the Slate post, are heartrending. The fact that women feel like they have to talk about stuff they might not want to discuss publically is infuriating.
gex
A million times this.
Abraxas
That if fucking heartbreaking.
Abraxas
That if fucking heartbreaking.
moderateindy
There is a pretty big difference between the two. Of course that doesn’t mean either is acceptable.
I might find the right’s position a little more palatable if they were willing to spend what was necessary to make sure that the fetuses they find so precious were taken care of once they were born.
Can you even imagine the cost of having a child like this? My nephew has a moderate case of Downs. My brother and his wife knew their child would have this affliction, but it was their first, and they didn’t know if they would be lucky enough to have another. So they decided against abortion, even though they are both pro-choice and not religious. Trying to get the proper services and therapies hasn’t been easy, and even with decent insurance the extra medical problems encountered put a decent ding in their pocketbooks. Of course they make decent money, so it’s not nearly as difficult as it would be for say a single mother. But the right doesn’t give a rat’s ass about the burden or suffering incurred by anytone but some fracking fetus. Because their version of the flying spaghetti monster demands each fetus be delivered, and each brain dead vegetable or wretched fool writhing in severe pain must continue their unbearable existence till plastic Jesus decides they are done.
Their logic is absurd. They believe that they have the constitutional right to practice their religion even if part of that practice is imposing their belief system upon others. Of course maybe that’s why the idea of pro-choice is so anathema to them.
Cermet
@bmaccnm: I am so sorry for your lost and especially the issues it caused. I am very thankful you didn’t follow through on those issues and are doing better. Just remember that taking to people about it is healthy and will help you. Don.t drop your guard and let depression creep up on you. Best of luck!
stratplayer
@tokyo ex-pat:
I am way past scared. I am fucking enraged.
Paul in KY
What kind of evil fucker would conciously bring a child into this world who suffered from a truly horrible birth defect like Tay Sachs?
Maybe Rih is the Antichrist?
Paul in KY
@Mnemosyne: It is not a ‘valid decision’ to bring a child into the world with Tay Sachs. It is a cruel thing to do (IMO).
Paul in KY
@bmaccnm: So sorry about your late daughter.
Ohio Mom
Somewhat off-topic, but ultra-ultra Orthodox Jews (who I believe are anti-abortion) deal with their community’s very high risk of Ty-Sachs by having their matchmakers (yes, how quaint) take into consideration prospective mates’ genetic test results. Two carriers will not be introduced. I wonder if that qualifies as the sort of pre-natal testing Santorum’s against.
Back on topic: As some upthread have mentioned, it can be extremely expensive to raise a kid a disability, more so if you want to give them every advantage you can (in some cases, those advantages might include things like “acquiring language”). All those interventions, therapies and adaptive equipment don’t come cheap.
When the right-wing comes out against public schooling, they’re attacking the source of the only therapies and interventions many kids with disabilities get. My kid’s had a couple of classmates who fit that description. Their parents used all their available resources to move into our suburban district. The kids don’t get everything they need but at least they get something.
And when right-wingers go on and on about privatizing Social Security, they’re talking about dismantling the funding source for many adults with disabilities whose main source of income is SS.
liberal
@bmaccnm:
As I’ve commented before, Henry Hyde was a moral monster. During some hearing on abortion (probably late-term ones), he hectored some woman who was testifying about the choice she made to abort her anencephalic child.
liberal
@Mnemosyne:
I think one of the justices (maybe O’Conner?) brought this up in an oral argument quite a long time ago.
liberal
@aimai:
That’s why the claim that Palin wasn’t really pregnant was the less awful one—her narrative of the birth leaves one to the conclusion that she was either inviting the death of her child, or she (and her physician) is just a complete moron.
Essayist-Lawyer
Let’s face it. Eugenics has been around since the beginning of time. Historically, most people born with a severe genetic deformity would not be marriageable. And if some obvious disorder like insanity ran in a family, people would be very reluctant to marry into that family.
These days it is more refined, that is all.