News from ACOG….

Patricia E. Bauer has a post up about the newest American College of Obstetrics and Gynecology (ACOG) guidelines that continue to widen the scope of recommended prenatal care.

Just about a year ago, ACOG released guidelines that opened prenatal screening to all pregnant women (previously, screening was thought best for women older than age 35 or for women with any genetic predispositions.)

This month, the recommendations expanded, to include prenatal testing for any pregnancy, including CVS and amniocentesis.

As before, my thoughts are about balance, and education: now more than ever, each pregnant woman deserves information, compassion and support throughout her entire pregnancy.

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13 thoughts on “News from ACOG….

  1. Thank you for all for all the wonderful comments. I agree education is key. Getting it in advance is often the hard part. When W.W. was 6 weeks early and I sat there having contractions and distressed it seemed like I only got half answers to everything I asked. I wish I’d known more going in then I did about the process more than anything else. But then I’m not sure if you’re really ever “prepared” enough.

    The idea of our children’s existence hanging on guidelines written by others scares me too.

  2. Thank you Christine for sharing although I am in tears.
    It is so scary to think that our children’s existence will lie in the hands of legislation and written guidelines.
    Oh yes, we do need hope and lots of it.

  3. I know my experiences are unfortunately not uncommon. Thankfully, when I did receive the Down syndrome diagnosis after my son was born, it was delivered with compassion and understanding. I was given a wealth of positive and valuable information. I was lucky on that front.

    I have signed a petition to get the Kennedy-Brownback Prenatally Diagnosed Act passed. It is sad that we need legislation, but it is good to know that something is being done to raise awareness.

  4. Oh Christine, my eyes teared-up when I read the part about 34 weeks. My babies were born at 33 weeks.

    And your experiences are not uncommon…Dr. Brian Skotko did research on the delivery of a diagnosis prenatally, and later another study on post-natal delivery, and he found many many instances of misinformation, or no information. Maybe you know of his work…

    And too, there is a bill in the Senate right now, and I think it will come to a vote sometime in January, it’s called the Kennedy-Brownback Prenatally Diagnosed Condition Act (I think) that would require doctors to give balanced information at the time of a diagnosis. It’s sad that we might have to legislate what I think doctors should be doing on their own, simply because the point of all of this is to give women good, complete information.

  5. Jennifer, you are right; lawsuits are definitely on the minds of these doctors. My OBs actually had a petition that they were asking patients to sign to change the malpractice laws here in Connecticut. The cost of insurance and fear of lawsuits was making it almost too expensive and risky for them to practice in the state (so they said).

    What is this world coming too when parents are bringing wrongful birth suits against their doctors because they don’t get the baby they expected? I lost a baby after having an amnio my doctor recommended I have (even though my screening tests were negative). I then went onto have a baby with Down syndrome (even though numerous early prenatal tests were “negative”). i never once thought about suing my doctor. I have thought about giving him a piece of my mind on the value of life, but never would I think of suing him because I didn’t get the baby the prenatal tests led me to believe I was going to have. Having babies is risky; there are no guarantees. Women need to appreciate this from the start.

    I still believe women have the right to choose, I just wished doctors would make it as easy to choose life as they make it to choose termination. I was 34 weeks pregnant with my son, when a perinatologist told me they thought he had a form of dwarfism and may not survive delivery. The next words out of her mouth was that I could still have an abortion if I wanted, but I would have to go to Kansas. Babies are born when they are 34 weeks gestation! There was not one word about where I could go to find support or information on raising a child who had dwarfism. Then, when it was later suggested that the he might have Down syndrome, I was still not given any real positive information. I delivered my son expecting him to either have a form of dwarfism or Down syndrome and my doctors (who were world renowned teachers at an Ivy League teaching hospital) did nothing to help me prepare me for either. I bet they would have gotten me an appointment at an abortion clinic in Kansas though. Sad.

  6. Christine, thank you for your insightful comment, the voice of experience. And I agree with all your points.

    And too, I wonder if the doctors, in addition to pushing for termination, are going to rely on these tests to avoid lawsuits. I remember my first OB/GYN appointment after the babies were born, and how I felt a distinct chill in the emotional atmosphere of the office, which had previously been very warm and friendly to me. At the time, I thought it was discrimination because of Avery’s Down syndrome.

    But now, I think it was something else: I’d had the screening, and the results were negative, which lead Tom and me to decide I wouldn’t have an amnio. Maybe the nurses and doctors in the office were worried that I might bring a lawsuit against them.

    What a world! To be sure, it’s very complicated. And I agree, women need to be thinking about all these things even before they become pregnant. These are life-changing issues.

  7. Betsy is dead on. Women need to be educated before having any tests. They need to make decisions while they are thinking clearly and not guided by the raw emotions that come when the news delivered that something might not be right with their baby. Ideally, women should be informed before getting pregnant.

    These new recommendations really sadden me. I have very little faith in the ACOG providing women and doctors with the information they need to make truly educated choices. In my experience (and I do have significant experience with prenatal testing and receiving a diagnosis), doctors want to make sure they can give women the option to have an abortion as early as possible. They are not concerned about providing women with information that will help them make a truly informed choice.

    I lost a baby after having an amniocentesis. I think back to the role my doctor played in having that test, and I get sick to my stomach. I am still trying to heal, not sure I ever truly will.

  8. Jennifer,

    Education has to begin before these tests are offered. The problem is, you cannot “un-know” something – and an expecting Mom has to ask herself the tough questions – before the tests are done.

    I think many women jump into these tests to reassure themselves, and the truth is, some of them are stunned when the results come back showing that there may be a problem.

    Many of them haven’t even considered that possibility, and are faced with decisions that should only be made with complete knowledge – from doctors, parents, etc.

    My hope for these recommendations is that we really are an evolving society, and that we, as moms, educate ourselves well before making decisions.

    With fingers crossed, I hope, hope, hope, that when asked the tough questions, most of us will emerge with some very surprising, wonderful answers…

    Betsy

  9. I agree with you.

    In fact, we had a meeting with our local genetics clinic about using ‘value-neutral’ language when counselling women who were about to go for an amnio.

    They had a slide about Down syndrome. On it, it had bullets that said:
    -mental retardation,
    -heart defects,
    -decreased life expectancy.

    Well, how can you sum the worth of a human being up in three bullets? Despite our best efforts to convince them to change the bullets to:
    -developmental delays
    -40% of babies are born with heart defects. Many of the defects repair on their own or are easily repaired by heart surgery
    -life expectancy has INCREASED to 50-60 years.

    …we had no luck changing these slides. See how powerful language can be?

  10. Yes, the first round of recommendations was dealing with the screening services, which are the blood tests and the high level ultrasounds, and other types of “soft” markers that would indicate a need to get further tests done.

    This second round of changes reflects the move to open the testing to all pregnant women. These tests are expensive, and come with a risk to maternal/fetal health (miscarriage).

    It’s my concern that testing will be done without education; that women won’t be empowered by the availability of additional information, but rather, they will ultimately have even less of a say-so than before.

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