Friday Night Must-Read

Seriously, read this post.

As my mind stopped listening and my heart nearly stopped beating I fought back tears of confusion and anger.   I thought back to the waiver I signed at my doctor’s office refusing genetic testing and requesting not to be given knowledge of any abnormalities or disabilities.  I thought of your daddy who was so far away.  How would I tell him this news?  They couldn’t be right.  There was no way, was there?  Wait!  You’re a girl!  A girl.  We’re having a girl!?  Daddy was supposed to be here with me to hear this news.  It is our news.  They stole our news. 

“Ma’am.  Ma’am!  I’m sorry, but we need your attention.  Because of your age and this being your first child we recommend that you do not attempt to carry to term. The chances of having a stillborn or late term miscarriage could potentially risk your fertility later on should you choose to try to conceive again. There are things we can do now that would make it less complicated.”

Those words will always burn in my mind.  “less complicated.”  “we recommend that you do not carry to term.” “Because of your age.”

What do those things even mean?!  How can they be said to a mother?

(Read the rest here)

This is an amazing story. I cried when she got to the part about tears rolling down her husband’s cheek in the delivery room. And she captured the pressure and overwhelming fear that doctors have the power to instill in parents perfectly. Go read it!

Oh, okay fine, I also love it because they chose a totally awesome name for their first daughter. Great minds, you know.

  • Adam Lee

    Out of curiosity, what do you think about the bills that would allow doctors to lie to women about whether there are genetic abnormalities in their fetus? For women who do want that information, of course.

    • Patrick Kane

      Purposefully lying to a patient, beyond being morally wrong, would be ethically indefensible. Interestingly enough, the Hippocratic Oath states: “I will not give a lethal drug to anyone if I am asked, nor will I advise
      such a plan; and similarly I will not give a woman a pessary to cause
      an abortion.”

    • Calah Alexander

      I think that’s completely ethically indefensible and I’m glad you brought it up, Adam. Actually I used to be very anti-genetic testing. Now I am changing my tune, because being somewhat emotionally unstable, I’d like to know what I’m facing and prepare myself. There is nothing wrong with giving people as full a medical picture as they can get. I really think gently explaining the situation briefly, sending the woman in question home with some information and a phone number, and following up in a matter of days with her and her husband would have been much more compassionate and less threatening. Fully informed consent is not something to be threatened by, I think. But I have enough of a beta personality to be thoroughly cowed by doctors in the best of times. In the worst, I end up in tears over something like taking cold medication they think I don’t need. It’s just a matter of being compassionate in all things, toward all parties involved. Full disclosure about genetic abnormalities is a form of compassion, and one that medical technology is uniquely able to give modern parents. It allows parents time to prepare themselves as best they can to accept and love the child they’re given, and provide for him or her as much as possible. But using that technology to try and convince them to terminate a developing life is not compassionate, especially when there is a clearly a margin of error, and when medical technology is advancing so quickly that there is substantial reason to believe such a child could live, love and be loved.

      • ARM

        I think you’re totally right about the answer you gave to the ethical question here, and as to the prudential question about genetic testing generally, this answer might be right for some people, but I don’t think it is for everybody.

        Myself, I would rather not know my child has Down Syndrome before birth, since it seems like it turns the child into primarily (at least subjectively) a diagnosis or a problem rather than a person: at a time when I hadn’t met or touched him, all I’d know is what’s wrong with him. Honestly, I’d much rather find out when he’s in my arms, kicking and breathing. I could see a case for genetic testing if there were significant interventions that could be done better with preparation, but I haven’t yet heard of any real life instances of that, except possibly spina bifida, but even there, the medical benefits are debatable. With Down Syndrome, any surgeries that might be needed are pretty routine, and any educational strategies needed don’t become relevant until months or years after birth.

        And beyond that, you have the problem that most of the first-level tests are “screening tests” that only show a 60% or 70% probability of the condition (as in this story), with the follow-up tests being more invasive and risky for the baby, so all you’re doing is giving the mom something to feel anxious about through the rest of the pregnancy, often for no reason. And then there’s the problem illustrated in this story of the strong bias of medical professionals towards advising “termination” at the first adverse screening.

        • Anna

          A friend of ours, whose son has Trisomy-13, advises other moms not to push too hard for a full diagnosis before birth. Otherwise, any issues around the birth are often assumed to be “just how these babies die” and the medical personnel won’t work as hard to save the child as they would with a healthy one. There’s no excuse for a doctor purposely lying to parents about potential problems, but there’s also no excuse for the doctors to act like they can perfectly predict the future. An awful lot of us know people, or are people, who had completely wrong diagnoses, or where a correct diagnosis wasn’t as dire in reality as it was painted. Like the friend above; Trisomy-13 is considered “incompatible with life” (and those babies often die shortly after birth) but her son is 4 and walking and doing many other things that he supposedly “can’t” do. Information should be factual, but shouldn’t be solely a worst-case scenario, and there should never be pressure to destroy the child, especially, one would think, in this day and age where there are so many resources for therapy and education and nursing assistance.
          On a different topic, *what* bills that would allow doctors to lie? I’ve never heard of such a thing being introduced, though certainly doctors should be protected from wrongful birth suits when they miss something, nor should they be required to offer abortion as an option for women who have received a possible adverse diagnosis. Anyway, citation please.

  • Apparent Tales

    Thank you so much for sharing my story!! It’s taken a long time for me to share. We didn’t tell anyone besides our parents what was happen through my pregnancy, because it just seemed to overwhelming at the time. It feels so good to be able to talk about it now and knowing that people can relate is comforting.