A normal pregnancy framed as a one with special needs

What if healthy pregnancies were treated like special needs pregnancies?

Mr. and Mrs. Johnson, good afternoon. I’m Doctor Dumas, a visiting obstetrician in Doctor Kwak’s practice. It’s nice to meet you.

Look, there’s no easy way to say this, so at the risk of sounding blunt, I have some bad news.

The technician and I reviewed your scans and we found that you’re about ten weeks along with a human fetus. I’m not seeing any abnormalities as far as growth or bone and organ structure, but you’re very clearly pregnant with a human baby. In all likelihood, you’ll carry the baby for another thirty weeks until your amniotic sac ruptures and the baby exits your body vaginally. In some cases, your baby will be extracted via cesarean section. Either mode carries its own set of risks and is extremely painful. We’re so very sorry.

Your baby will be born, unless you suffer a miscarriage or stillbirth. After his birth, he will live, and then he will die. He will live until he dies. I’m sorry to say that life is terminal. The fatality rate for human beings is 100%. If he survives past birth, you’d just be living on borrowed time.

How long does he have? We’re not sure. Humans typically live until their mid-seventies, depending on where they’re born and a variety of other factors. But many die at age 5, or 15, or 30. We can’t predict with any certainty how long he has, but we know that death is an inevitability. You probably have a history of death in your family.

We’re also sad to say that your child has cancer. Well, not right now, but statistically it’s possible. You’re carrying a human child, and fourteen thousand of them every single year get some kind of cancer. In fact, the second leading cause of death between kids ages 5-14 is cancer. This is second only to unintentional accidents like a gun misfiring or some sort of collision. So if your baby doesn’t die in a car wreck first, I’m afraid there’s a chance he’ll get cancer. I’m so sorry.

If by some chance we prolong his life until age 15, the odds don’t look good then either. It’s not totally hopeless — I mean, never say never, right? — but teen mortality rates are climbing. There’s always a risk of car accidents, overdose, and particularly suicide. The suicide rate is particularly troublesome. I’m a numbers man, so I’ll give it to you straight: Thirty three thousand teenagers committed suicide in 2006. And being born is the leading cause of eventually committing suicide.

I know you have a lot to think about. Just try to breathe. There are a lot of options. It’s important to take care of yourself first, and your marriage. Children are a big contributor to divorce. Almost forty percent of divorced people have children at one point. Suicide, cancer, divorce … if the baby survives birth, you’d be bringing him into a pretty questionable environment. You’ve got problems coming at him from all angles. Multiple problems. Quality of life is important to consider.

This is the part of my job I hate. I can only imagine how shocking and upsetting this is for you. Unfortunately, we have even more difficult news. Your chorionic villus sampling test came back with some red flags. Our tests indicate that you’re very likely having  a boy. This occurs typically in half of all pregnancies, and nobody really knows why. We know the Y chromosome plays a part, and we know the father is the carrier.

These things just happen.

Risks? Well, males typically have higher testosterone, which could lead to anger issues. They’re more likely to abuse alcohol and much more likely to rape. Something like 90% of all homicide offenders are men, and the vast majority of inmates in the penal system are men as well.

You have a 1 in 2 chance of having another boy, should you choose to get pregnant again. You could also try for a girl, but there are risks involved with a girl as well. Girls are much more likely to be raped and make up the vast majority of sex-related homicides. 100% of people who die in childbirth are women. Women are less likely to commit suicide and rape other people, but they’re infinitely more likely to die of ovarian and breast cancer. There are significant risks, whatever you do. I’m afraid it’s inescapable.

Well, you have a lot of options. You can take your chances, or you can terminate. I can’t make that decision for you, but I will say that terminating now will let you start the healing process that much sooner. It’s early in the pregnancy, and it would probably be easier to do it now rather than wait twenty five years to see if he turns out to be a rapist.

On the bright side, he could be worse. Your baby is caucasian. Black children are three times more likely to grow up in poverty, and black men are twenty times more likely to be sent to prison than white men. The outcome is just very poor for people of color. I wouldn’t wish that on anybody. Just be grateful he isn’t a girl. Or black. Or a black girl, God forbid.

So. Talk it over. You two have a lot to discuss.

Sarah Watts is a parent of a child with special needs.  She blogs at wifeytini.

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  • JR

    “A normal pregnancy” makes it sound like this is a story about one person, but it’s not, it’s about “Re-framing Normal Pregnancies in the Language of Special Needs”. I know the author doesn’t title their own work here, but it made the article hard to read and understand because I kept thinking this was a personal story about an individual.

    Critisim for the author: We’re taught to write essays in a certain format, thesis statement, arguments that support that statement, concluding statement. Because of this, our audience reads our work that way. When I was finished with this piece, my take away was “Just be grateful he isn’t a girl. Or black. Or a black girl, God forbid.”

    It took me reading five or six articles on your blog to understand what you were trying to convey with this essay. Part of that is because it’s taken out of the context of your blog, and titled in an unfortunate way. But part is just there is no other conclusive statement to tie everything together and give the audience that ‘zinger’ moment were we understand the message.

    For other readers: The author has a child with spina bifida, and is looking to re-frame the way we think and speak about disability and the prognosis of disabled infants.

    • JR

      Thanks for updating the article – I think future readers will find the subject matter clearer.

  • maggiebea

    Gee, JR, I didn’t have any trouble at all understanding this story, which I’m reading on KevinMD and not the original blog (where it seems entirely possible that the story would be even easier to follow). Criticism for the ‘author’ of your comment: Next time you might want to consider how it feels to have your entire post dismissed for tone and title, rather than understood (no matter how much work it seems to have taken for you to get it). I wish you had commented on the content.

    Comment for the OP, Sarah Watts: Wow. If this is how the obstetrical/neonatal industry talks to parents of children with demonstrable anomalies, how can we educate them to do better? As a hospital chaplain, I’ve been appalled at the level of ableism in the ER (full disclosure, I haven’t worked in labor & delivery or postpartum yet). Doesn’t anybody ever tell med students that every life has a few challenges and that lots of people with anomalous bodies have wonderful lives? So sorry to read (by implication, at least) that you’ve been on the receiving end of this kind of huge load of nonsense bad news.

    • JR

      You can hit the “reply” button under my name to respond to my posts if you’d like.

      1. A common complaint from the regulars on this site is to STOP re-titling author’s blog posts. Sometimes re-titling the posts makes the author seem to be making statements they aren’t, or fogs or confuses what the author is saying. It has caused a lot of problems in the past, and I think this is another case of a bad title that wasn’t written by the author.

      2. Based on the title, I was reading “My pregnancy, which is normal, was described as if it was a problem to me, but it wasn’t”. So the essay that followed was completely confusing, and the concluding statement came across as very offensive.

      3. If someone declares their goal in life is to be a writer (as the author did on her blog), then I think constructive criticism of someone’s writing is completely appropriate. I didn’t criticize the “tone” of the article at all.

      • PrimaryCareDoc

        I’m with JR on this one. Without the context of the writer’s blog and history, I read this and just said, “huh?”

  • http://www.amerechristian.com/ Ron Smith

    Hi, Sarah.

    Stacy and I had Laura, a severely disabled child. She passed away on April 24, 2012 after caring for her ourselves for 24 longs years. She was never developmentally beyond 3 to 6 months.

    I think you might like to read her story. Its free and availble from iTunes and from Goodreads.com if you have a literary existence there. If not, I’ll be glad to send you the epub via email. My address is ron (at) ronsmithmd (dot) com.

    If you decide to read her story, then the next thing I recommend is one I wrote about my self-examination as a result of standing all those years with Stacy. Its called A Mere Christian. You can find it on Barnes and Noble, Amazon, iTunes in ebook and paperback.

    Before you think that this is a shameless plug, let me explain that it is not. I’ve been a Pediatrician for 31 years and your description of life and death is moving in light of Laura, and also my Father who is dealing with terminal lung cancer at present.

    I believe there is nothing noble about death, whatever way we try to whitewash it with adjacent terms like ‘easy’ or ‘on my terms, etc. Death is a stench and a shameful dishone of mankind. Being a physician means that I do what I can to treat the illnesses that afflict my patients with all my being.

    But I do this knowing that, for me, to treat only the physical nature of these children is retributive. How could I not share the only hope that defeats death?

    Without hope, why bother?

    Warmest regards,

    Ron Smith, MD
    www (adot) amerechristian (adot) com

  • Dr. Drake Ramoray