Parenting Month: The Cost of Superbabies

February 27, 2012

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Here we are, the topic that really inspired this whole series on parenting for me.

See, my wife and I have sat in the waiting rooms where people go when nature needs some help making babies.  And there’s always these helpful pamphlets sitting around offering all kinds of “counseling.”

Counseling?  Sounds helpful!  Though I just can’t decipher what “genetic counseling” means.  But it looks so promising.  Look at those happy couples in the pamphlet with their perfect baby.  And there are hundreds of tests that we can opt for, before and during pregnancy, which promise to help us make “informed” decisions.

And look at that, the pamphlet even promises that we can wipe out Down’s Syndrome, through the magic of science!

What prospective parent would choose to be uninformed?  And what parent would choose for their kid to have Down’s Syndrome?  It sounds so promising, but maybe in a George Orwell dystopian nightmare kind of way.

The pamphlets and tests and medical advice are so commonplace, I don’t really know what to do.  So I asked for some help to sort things out.

Would You Like To Take A Survey?

The first question that came to my mind was how many people are really getting genetic counseling and these dozens of prenatal tests.  The literature and doctors make it sound so ordinary and mundane, like cold medicine.  The prospect of the hundreds of genetic defects my child might be born with scares me to death.

“I personally have never opted for any of the additional testing (I have four kids ages 9 years to 6 months) because they are faulty, offer too many false positives which just end up stressing parents out and it wouldn’t have changed anything about my pregnancy decisions.”

Alexandra Kuykendall – “Momology,” MOPS.org

Who Doesn’t Want a Perfect Baby?

Okay, it’s good to know that I don’t have to get all the tests, and I won’t be a horrible dad.  But something sinister struck me about this whole thing.  How can genetic counseling eliminate Down’s Syndrome?  It all sounded vaguely like an experiment in creating a master human race, popular with the Nazis and their eugenics program.  Everyone wants a perfect baby.  But how can everyone be perfect?

Genetic counseling = eugenics.  I can’t improve on that. 

Sorry, I think genetics counseling is all about opening a path to abortion, which I never want to support on principle.  The only exception I can see is when genetic  counseling is used to determine odds that a child may have a inherited disease before his/her parents are conceiving.  I can see that information as useful in discernment.  But that’s it. 

There is a new noninvasive test for Down syndrome in utero, coming out in 2012, and the big pharm company advertising this says things like “this will eliminate” Down’s Syndrome from the map.  Well, only if American prenatal care makes every woman take the test at nine weeks and makes the mother have an abortion if it’s positive.  The very claim is just chilling: if you have a disability, you’re better off dead. 

I think about how many children I see with DS nowadays…virtually none, compared to when I was growing up in the 70s and 80s.  That’s because 90% of “DS suspicions” are aborted today.  I see genetic counseling as a way to do violence against some of the most vulnerable people in the world, people we have to learn a thing or two from in the first place.” 

Susan – “The Ironic Catholic”

A Roll of the Dice

Unfortunately, my suspicions were validated.  Now I just don’t know what I’m going to do.  To be honest, the prospect of having a special needs kid scares the crap out of me, and almost makes me want to skip this whole thing.  Do I choose to live in the dark and roll the dice, staying willfully ignorant in the name of faith and justice?  Every parent wants the best for their kids.  How can I make sure my child gets off on the right start?

“Genetic counseling is not a bad idea.  Any tool that better equips professionals and families to best prepare for the unique needs of a newborn is a good idea.  The fact that many, possibly even most, professionals and families use this instead as a tool for determining if they will “keep” their child is a cataclysmic shame.

No one can tell the future. Even a “perfect” embryo may grow to get cancer, join a gang, get hit by a car, or someday become a politician.  If you’re having a child out of love, these are some the risks you must take.  Also prenatal tests do not show potential.  Every person is unique and his gifts are not known until he has the chance to show the world his part in the universal puzzle. Great people and even a few ordinary folks who have made a positive difference in their communities have come out the diverse challenge we call ‘disability.’”  

Madra S. – “Madonna School Celebration”

Well, I think I know where I stand on this, but I’d love to hear from you.  What do you think?  Is all that modern science offers good for Christian discernment?  Statistically, part of those 90% of Down’s Syndrome suspicions have to be Christian parents.  Do we have a moral obligation to make “perfect” babies?

30 responses to Parenting Month: The Cost of Superbabies

  1. There’s no such a thing as a perfect baby.

    No matter what the physical characteristics may be…the little tyke has a real sin problem…just like the rest of us.

    Ok, ok…sermon is over.

    • Maybe there’s some parents who it would do them some good to realize that. 😉 I have junior high students whose parents still think they’re perfect just because they have ten fingers and ten toes.

      • Now you’re touching my favorite line of reasoning:

        “It’s impossible that he made a C! He’s always been an A student!”

        Try pointing out to parents the fact that their line of reasoning also applies to “But I can’t be speeding, Officer! I’ve never gotten a ticket before!”

        Or “He can’t be getting taller! He’s always been shorter!”

        Or “It can’t be Tuesday! It was Monday ALL DAY YESTERDAY!”

  2. I was taught in med school that the rationale behind offering genetic testing to couples that are opposed to abortion is so that they can be prepared ahead of time for the prospect of having a special needs child.

    No, genetic testing can’t predict everything that can potentially go wrong with a kid. However, knowing ahead of time that their baby will have Down syndrome or some other kind of special need does give parents the opportunity to be a little better prepared for it–find out if they need special equipment or extra room in their house, they can have time to talk to other parents facing similar issues, let older siblings know what to expect, etc.

    On a related note (if you want to talk Orwellian), when I was med school, every year all of the girls got flyers in our mailboxes from fertility clinics that were buying eggs (I think they offered somewhere around $10000 an egg–a tempting prospect for someone facing $100K of student loan debt!)

    The notion of people trying to breed superbabies by paying through the nose for med student eggs creeped me out to no end. However, I briefly considered donating just to screw with people–it’s kinda sick but I thought it’d be hilarious to inflict my poor eyesight, crooked teeth, anxiety issues, and allergy problems on some yuppie couple that thought that they were going to improve their gene pool.

    • Education/preparation/support I would encourage medically and spiritually as a pastor. Especially support for those times when education/preparation may not have included unseen circumstances.
      LOL!! Screwing with the misconception of ones “perfect gene pool” cracks me up.

  3. I also think that genetic counseling might become _A Brave New World_ or “Gattica” situation, where parents hand pick their children’s genetic makeup–at least the ones who can afford it.

    I personally think that God gives us the poor, the sick, the genetically messed up to teach us His compassion and to teach us how to rely on Him for all things. Without them, we become hard hearted.

    • So imagine this: if 90% of DSes are already terminated, how will society look at people in the future who ate genetically imperfect. We already demonize people who smoke or are overweight. Maybe parents who don’t opt for genetic engineering will be demonized because they made a choice to have an imperfect child that puts a drain on society.

      • If you haven’t watched “Gattica” you should. It deals with this question and some of the unintended consequences of genetic manipulation. I think _A Brave New World_ by Aldous Huxley deals with what happens when the government gets involved in genetic engineering future generations.

        I think we are already becoming a pretty hard-hearted society. I don’t know what your FB traffic looked like when Whitney Houston died, but I saw a lot of people basically slamming her. Whereas I think to myself, if I had billions of dollars in my 20’s, I probably would have done the same thing as Whitney, especially since that was my “pagan” years. And once a bad habit starts, whether it is pigging out on ice cream, watching soap operas or getting addicted to drugs, it is a hard habit to break. (okay, the soap operas were pretty easy, especially once I had to work for a living :-) )

        I saw the same hard heartedness when Michael Jackson died and even when Steve Jobs died. To quote Ross Perot, “It is sad, just sad.”

  4. Maybe what the acid test is, Matt, is whether the genetic counseling staff give support to parents looking at (potential or conceived) special needs baby. Do they give names of families and support groups for families working with _____? Or not?

    I’m very involved in Reeces Rainbow, as I think you know, which advocates for adopting kids with special needs internationally. I’ve gotten to know a lot of the parents there. Many have adopted a kid with special needs after giving birth to a child with special needs. Sure, in some ways, their lives are more difficult–more doctor’s appts, more worry, more wrangling with IEPs and insurance companies, etc.. But typical kids have a lot of needs too. And they strike me as happier than the average population–because they have realized they need to trust in God and reach out to God’s church for hia grace every single day. I would not wish a disability on a child, who would? But they are beautiful and a joy to their families. They could be a joy to our society if we gave them a chance.

    P.s. if you theo-geeks out there want a good read, read Amos Yong’s Theology and Down Syndrome or The Bible, Disability, and the Church.

  5. Our personal philosophy on genetic testing was that we would get whatever testing the midwives/docs recommended as long as it didn’t pose a danger to the baby. Amniocentesis and CVS (and it seems like there was at least one other) come with a risk of _causing_ miscarriage. I don’t mind taking the blood tests, because there’s nothing wrong with being prepared.

    Our second child’s 20-week sono showed a possibility of Trisomy-18 (genetic anomaly similar to DS (which is Trisomy-23, I believe), except that most babies with it don’t make it to term, and only make it a few hours or days at most if they survive the birth). There was no way we were going to risk a 1 in 250 chance of miscarriage caused by the amnio (the only truly diagnostic option) in order to figure out “for sure” if our child was one of the 1 in 300 who might have Trisomy-18, given what they saw in the sono.

    Gotta say how VERY glad I was to be in a Catholic hospital that day. I’d totaled our car on the way to the appointment (great time to already have a sonogram scheduled if you’re pregnant, btw) and then got the news that our baby might not make it to term. Our ~18-mo-old son was there with us. My husband didn’t know what Trisomy-18 meant. I was just trying not to lose it completely. Having to have the “NO I WILL NOT KILL MY BABY JUST BECAUSE THERE’S A CHANCE SOMETHING MIGHT BE WRONG WITH HIM/HER” conversation with a “helpful” radiologist would have been messy.

    • That’s an ironically timely comment – how glad you were to be in a Catholic hospital. Who knew a faith based service could have advantages!

      • Ha! Yes, the irony of that was not lost on me!

        Thankfully, the follow-up sono 8 weeks later showed that she was fine (and indeed, she is perfectly healthy except for normal stuff). But that was a scary 8 weeks. I would have been fine with Downs, but the whole not knowing whether or not your baby would even make it to birth…and if they did, while that may be nice for me, would I really (selfishly) want them to struggle for every breath for hours or days or weeks? (Not implying abortion, but just having them be stillborn instead of making it to term.)

        Parenting, from the moment of conception, is fraught with scary, horrible things. But parenting, from the moment of conception, is full of joy, privilege (I understand fully what a blessing it is, having seen many friends struggle with primary and secondary infertility, among other things), and an understanding of God’s love that has a wildly different quality from my understanding prior to having my own kids. Not a better understanding, necessarily, just a different one.

        In a past conversation on a similar subject, you asked if I thought that not having kids was a “curse” since having kids was a “blessing.” I think my response was ‘yes, if you consider “curse” and “blessing” to be opposites.’ I feel the need to clarify that a bit. I don’t see infertility as God smiting someone (necessarily, although I suppose it could be the case). I think each of us has some “issue” that we deal with that we need to come to terms with in one form or another. My husband feels (at times) he’s been “cursed” with ADD. I have my own issues. Everyone’s got something that could put distance in their relationship with God, or that could be used to draw them closer. Infertility is one of those things. In that way, it could be a “curse” (like ADD or cancer or a job loss or divorce, etc.). But God also uses (almost exclusively) the broken people of the world to accomplish His will.

        And just like people have their own individual issues that they deal with, we’re also each blessed differently. Some have more money than others, some better relationships, some a job they’re passionate about, some have kids. I don’t think it’s a zero-sum game where it necessarily equals out for everyone, but while I _do_ absolutely see children as a blessing, I also recognize that they’re not the _only_ way that God blesses people.

        Sorry for the tangent!

    • Melissa–can I ask if you felt that your experience with the whole decision-making process (i.e. to have the amnio or not) would’ve really been different at a non-Catholic hospital? And if yes, why?

      I’m honestly not trying to be argumentative (and I certainly don’t want to drag up all the crap from two weeks ago)–it just seems to me that trying to talk you into getting an amnio done on the very same day when you’re still trying to process the news of the abnormal sonogram (and recovering from getting the car totalled, to boot) would’ve been kind of a jerky move for any doctor to make, Catholic or not. Do you have reason to believe that this would’ve happened had you not gone to a Catholic hospital?

      • I wouldn’t have expected to be pressured into having an amnio that day, regardless of where I was. I just expect that the possibility of abortion would have been brought up, had I been anywhere other than a Catholic hospital. I wouldn’t have handled that well at the time.

        • All the same, suggesting an abortion at that point in time would’ve been pretty tactless and stupid, in my opinion.

          • I was 20 weeks along. If they hadn’t brought it up immediately, I likely wouldn’t have had time to do it, depending on the laws in my state. Isn’t it 22-24 weeks in most states? Or does it go up to the end of the 2nd trimester? (And that’s only 26-27 weeks, so still, not a _whole_ lot of time, considering the gravity of the choices.) I know late-term abortions are legal in some places, but I guess I just assume that most states require that they happen earlier in the pregnancy.

            Anyway, I’ve thankfully never had that type of experience anywhere else to know first-hand how it would have been handled.

          • Melissa–

            I couldn’t tell you for sure–I’m pretty sure it depends on the state, although I have a vague recollection of roughly 25 weeks being pretty average, but don’t quote me on that. Given the gravity of the situation it just seems like a totally inappropriate thing to discuss when someone just gets handed a “maybe” trisomy diagnosis–which made me suspect that the care you would’ve gotten at a ‘secular’ hospital would’ve been pretty similar.

            However, I’d take my opinion with a big grain of salt–I hated OB in med school and didn’t specialize in it, so my knowledge of “standard operating procedure” for stuff like this is sketchy at best. I am glad to hear it all worked out for you in the end.

          • Just curious (and seriously not trying to start anything here), but when _would_ you think would be an appropriate time to bring it up? I guess it’s just been my assumption that the “your baby may be very sick” conversation was pretty much always followed up with “do you want to carry this pregnancy to term, or do you want to know about other options?”

            I’ve got a friend who is currently carrying a very sick baby. His chances of surviving birth and making it outside the womb are slim, at best. I haven’t asked, but a comment made on their CaringBridge site made me think that they’d had that conversation. They found out he was sick at their 20-week sono too.

            I know my perspective may be different from the norm of women having babies these days, but I can’t imagine that there’s ever a _good_ time for that conversation.

          • I don’t know what that would be like, and I don’t think I can imagine.

          • @Matt – I don’t even _want_ to imagine!

          • Melissa–

            Sorry about the delay.

            When would I think it’d be appropriate to bring it up? Maybe a few days later to maybe a week. After the diagnosis is fairly certain and emotions are a bit less high.

            I’m just guessing here–I’ve never been (and hope never to be) in the position to make that decision. Like I said, I hated OB and treating pregnant women and babies freaks me out.

            However, I specialize in adults, and I’ve frequently had the “end-of-life” discussion with families. Do we continue life support, do we make them a DNR, that sort of thing. And I generally don’t put that question to the family on the same day that things really start to go south.

  6. Before I knew any better, I agreed to the blood tests the doctor offered me when I was around 16 weeks pregnant that would test for things like Down’s and Trisomy. I didn’t know that more time than not, they give false positives. Well, my results came back with a very good chance that my child had DS. I knew it was serious when my doctor called me personally. Not his nurse. My OB. Called me. At work.

    So, luckily, my husband’s cousin is an OB nurse and talked me down and told me that there are so many false positives and that lots of women don’t even get the test because of that. I was scheduled for a “high risk” ultrasound. I was only 30 at the time and didn’t have any history of problems in my background so “high risk” was sort of weird to me. We were talked to by a genetic counselor and they basically just told us of the possibilities of what the test results meant. We got the ultrasound (and found out we were having a boy!) and the high risk doctor basically told us that there was a very, very small chance something was wrong and that as far as he could tell, we were in the clear. No indication of problems. We were so relieved. He told us we could have an amnio, which we declined due to the risk of miscarriage.

    Basically, having that test just did more to freak me out and cause stress than I needed. Yes, I would have liked to be prepared if something WERE wrong, but if I ever get pregnant again, we will not be doing that test. Luckily, the staff was so gracious to us and they knew we would keep the baby had he not been perfectly healthy so they did everything they could to accommodate us.

  7. That’s interesting that you should bring this up! We’re expecting our first baby in June, and part of our first prenatal checkup was to go over testing options. I’m seeing a midwife instead of an OB, so I think she was less pushy than some doctors on this issue, which was nice. Actually, she asked us a great question: Would you do anything different if you found out your baby had a chance of being disabled? We said no, and so she recommended that we skip the testing. No point in going through the stress (often there are false positives which lead to amniocentesis, which is itself a risk.)

    We’re excited to meet our little girl (yes, we found out!) in a few months, and honestly, after we made the decision to not get tested, feel at total peace about it. There are very few genetic issues out there which would require your baby immediate attention after s/he was born, and if you are a carrier, I think that could be helpful to get tested for, just so you are prepared. Other than that, I don’t see any need. Downs Syndrome isn’t immediately life threatening, and I’m sure your future bundle of joy will be perfect, no matter what. <3

  8. It just goes to show you we rely on science more than God. Science says; “We can figure this out.” and God says: “I have known about this since before the foundations of the earth.”

    Some days I wonder how many Christians actually hear from God?

    My wife and I were not going to have kids because of our age. We had genetic markers putting our offspring at risk for CF, and of course DS. Our plans were not His plans. We had one child, and after a few years of trying for 2 (another one of our plans), decided that was it. As it is, I will be 65 when my youngest is 20.

    I am with you – no one wants an imperfect child whatever that is. We want to fit into the mainstream of life. Diapers, parent-teacher conferences, ballet lessons or ball games, awards banquets, graduations and weddings – it is what makes us want to put up with the day-to-day with our kids.

    For the mature, you know you are signing up for sorts of things to go wrong with kids; that includes a complications at birth! (A place where God id a miracle!) We don’t want to get the dreaded call from the police or worse. We don’t want them to fall and skin a knee, or be rejected by peers, fail in school or lose a soccer game – nope, we want their life to be easy, and worry free – like ours is. 😉

    In the end, we know that our kids are a gift from God; one which He uses to form us.

  9. Today I’m encouraging folks to take a “5 Minute Wonder Break”
    “People see me
    I’m a challenge to your balance
    I’m over your heads
    How I confound you and astound you
    To know I must be one of the wonders
    Of god’s own creation
    And as far as you can see you can offer me
    No explanation” – Natalie Merchant

    Seems appropriate to your notes too. :)

  10. I worked in OB/gyn for 8 years at a large practice that is affiliated with a catholic hospital. None of our drs perform abortions because of that affiliation, thankfully. Anyway, over the course of those years of talking to 100’s of pregnant moms and bring involved in their care, I saw firsthand the stress and worry that the genetic testing put upon these mothers. The 16 week prenatal risk profile has a HUGE incidence of false positives. Out of all the positive results I believe in 8 years there were 11 that either did have DS or Trisomy-18 or other fatal conditions. Because of that with my pregnancies I elected to do no risk profiles or testing other than a pregnancy confirmation ultrasound at 6-10 weeks and the anatomy scan between 18-24 weeks. My dr (who is a believer) agreed with me that if I know that terminating the pregnancy would never be an option there was no sense in potentially freaking myself out and possibly causing undue stress during the time I would be growing another human life, whether that life was to be “disabled” or not. My husband and I believed that if we were to have a baby with DS or other genetic abnormality that He was going to specially equip us to parent that child, as He had already chosen us to parent this new life. On another note, one of the few patients who did have a positive amino for DS did end up going to the local university hospital and having a mid term abortion. She and her family are Catholic and the guilt of their decision crushed her to the point that weeks later she killed herself. She left her husband and two small children behind because she was terrorized at the thought that she had killed her child because of his DS diagnosis. Heartbreaking. No mother should have to choose to abort her child because of something that be “wrong” with them. It shouldn’t even be an option. Instead we are called I believe to support and assist and love these children and these parents who face the task of caring for the needs of these kids. Plus, where will it end once technology allows them to test for a propensity to develop cancer, or bipolar/ mentall illness,etc. it’s a slippery slope.

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