Resources for Women with a Prenatal Diagnosis of Down syndrome

An image from the Lettercase booklet

As many of you know, I’ve been working on an ebook about prenatal testing for a few months now. It’s in the final stages, and one of the things I want to include in the book is resources for women and their families when faced with a prenatal diagnosis of Down syndrome. I asked Stephanie Meredith, Author of “Understanding a Down Syndrome Diagnosis” and Co-Author of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome,” to provide some information:

I’m happy to share that last week we released a free, digital version of our booklet, “Understanding a Down Syndrome Diagnosis.” Our booklet is unique because it’s the only resource to have been reviewed by representatives of the national Down syndrome and medical organizations — truly reflecting balanced, accurate, and up-to-date information. This booklet is specifically for women during that critical moment when they are first learning about a diagnosis and unsure about what it means or what to do. A recent study by the CDC/NCBDDD about the attitudes of women who are or may become pregnant concluded the following:

“Findings from our study parallel the contents of a booklet that was recently developed for parents who receive a diagnosis of [Down syndrome] (www.lettercase.org). The booklet includes clinical information about DS, information about families with a child with DS, the degree of medical complications, resources for parents, among many other topics. The booklet also contains many photographs of children with DS engaging in everyday activities.” (Levis et. al., 2012)

You can get a free, digital copy at www.lettercase.org [http://lettercase.org/get-the-booklet/] — in English or Spanish. You can also purchase a printed copy from the bookstore [http://lettercase.org/bookstore/], and all proceeds go to our administrator, the Human Development Institute at the University of Kentucky.

Other helpful resources for expectant parents include “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” [downsyndromepregnancy.org], Brighter Tomorrows [brightertomorrows.org], and the Down Syndrome Adoption Network [http://dsagc.com/programs_adoption.asp].

Stephanie has also recently written a more personal post about her own experience of learning that her son had Down syndrome and the best resources for expectant mothers at Simply Modern Mom.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. This sounds great. I just went to look at it, but I don’t have any of the devices that the files are specified for (iPad, Kindle, etc). Will one of the options work for a regular computer?

  2. T – Amazon have a download Kindle reader for PC here
    http://www.amazon.com/gp/feature.html?ie=UTF8&docId=1000426311
    If you download and install then click the Kindle download version of the booklet it should open in the new programme automatically (it has for me)

  3. So happy to hear this beautiful booklet is available as an ebook, I will spread the word, Amy Julia!

  4. lkinross says:

    Love this and will include when we do updates in our online Family Resource Centre.

  5. I do hope that the title of this blog is an oversight and
    that Men are not now an irrelevant factor in matters that affect their
    children. Putting that aside, I took a deep breath and thought that I would
    make a few observations as a father of a child with Down syndrome who is
    involved in advocacy for people with Down syndrome around this issue.

    My honest reaction is one of disappointment. This was a great opportunity to
    promote dignity and respect for our children, but we have fallen into the two
    classics flaws.

    Firstly the booklet is heavily medically biased, presenting Down syndrome in a
    dated medical model of disability, rather than a modern social view of
    disability. There is much focus on medical issues and developmental milestones.
    These things do not define people with Down syndrome. People with Down syndrome
    are defined by their basic human dignity. The irony is that these medical
    issues can affect any child, yet we don’t give parents a whole list of might’s
    and maybes of “what might go wrong” with other children and then talk
    about aborting them as a personal decision on the basis of those possibilities.
    Yet here we are saying exactly that to new parents where there is a diagnosis
    of Down syndrome! In fact the parents are even parents; they are referred to as
    “patients”. How many patients are there one may even ask. Certainly
    at least one of them isn’t been offered a personal decision on something that
    affects them.

    Secondly, we have the confusion on who is being considered in advocating on
    this issue. Is it the parents and their personal decisions, or as parents are
    we advocating for people with Down syndrome to be treated as equals without
    discrimination? I find it abhorrent that a resource for screening for Down
    syndrome discusses options to abort an unborn child because it has Down
    syndrome. It is demeaning to people with Down syndrome and other disabilities.
    We are dealing here with parents with a wanted pregnancy. They have sought
    prenatal health care and that should be the focus. If there is an unexpected
    diagnosis then that is the first moment they are called to be true parents and
    provide unconditional love and support to their child. The inherent dignity and
    value of that wanted life is not suddenly eroded because there is a diagnosis
    of Down syndrome. We should be providing compassion and support in those
    situations and not be presenting options for abortion. If we are true advocates
    for people with Down syndrome then we shouldn’t be indifferent to our community
    being targeted for birth prevention.

    Unfortunately I find that the booklet presents the wrong
    message. It presents our community as being defined by medical issues and discusses
    options to terminate pregnancies because another human being has Down syndrome.
    I actually find that really sad, especially when it comes from our own
    community. I look at my beautiful daughter and her awesome life and I just go
    wow – what’s the big deal?

    • I know-absurd isn’t it Mike-what is the big deal? I so agree and so often find myself saying the same thing about my beloved teenager with DS……

  6. Stephanie says:

    I believe we can acknowledge both the dignity and value of people with disabilities and a woman’s legally available reproductive options if we want information about a prenatally diagnosed condition provided at the moment of diagnosis. Moreover, the medical community in the US was very specific in our conversations with their leadership that in order for any information to make it into the hands of patients at that time, indeed, we must acknowledge all reproductive options as well as the tremendous progress of people with Down syndrome in the past 30 years. And, yes, this booklet is specifically for women at the time of diagnosis who may or may not have decided to become parents yet, so they are the patients of the medical providers. Moreover, we included important information about the resilience of families and beautiful photography of people with Down syndrome in the context of their lives. In fact, each family was interviewed, and all photos were taken on location to reflect the interests of the individual with Down syndrome. So, we worked with both the medical and advocacy communities to achieve a balance of information so that women can receive information immediately from their medical provider.

  7. While I thought much of the information was good and positive, as someone who chose to adopt, I was disappointed that adoption was incuded in the same sentence as abortion. they are NOT equivalent choices. Adoption, while a difficult decision for the birth parents, is an act of unselfish love that brings joy to others.

    Termination/abortion is never “safe” for the baby in the womb and, as your information points out, can be very traumatic for the mother (and the father and any siblings). Why not empower parents by assuring them that they have the ability to love their child and choose life.

  8. Alison Piepmeier says:

    I find this to be a wonderful book, one that achieves that incredibly challenging thing–balance. The pictures of kids with Down syndrome going through their daily activities are just beautiful and incredibly humanizing. But yes, the book has to address medical issues as well. And of course the book has to acknowledge that terminating the pregnancy is an option. It’s legally and medically an option–pretending it’s not would be ridiculous (and would mean that no medical professional in this country would give this book to her or his patients).

    This isn’t a book that encourages potential parents to terminate a pregnancy. It’s a book that gives them an informative, balanced perspective on Down syndrome as a starting point. I encourage folks to get their hands on the paper version–it has even more pictures and is just gorgeous.

  9. Mark Leach says:

    In 2011, the National Society of Genetic Counselors (NSGC) recognized the Lettercase booklet “Understanding a Down Syndrome Diagnosis” as an approved resource for expectant mothers receiving a prenatal diagnosis. In 2012, one of the authors of the American College of Obstetricians & Gynecologists’ (ACOG) recommendations for all women to be offered prenatal testing for Down syndrome cited the booklets as the effort by the medical community to provide accurate, balanced information to their patients, describing the booklets as “beautiful.” Just recently, the American College of Medical Genetics highlighted “Understanding a Down Syndrome Diagnosis” becoming available for free on-line. No other resource has received the amount of support and recognition from professional medical societies than the Lettercase booklets, and this is precisely because of what information it shares. Medical providers are the gatekeepers of information about Down syndrome. Mothers report the two resources they rely upon when receiving their diagnosis are their health care provider and educational materials they either receive or find on their own. The support of the medical leadership allows medical professionals to then provide these materials to their patients, which is significant given that studies show that otherwise, physicians more often than not do not provide educational materials about Down syndrome with a diagnosis. Indeed, the Lettercase booklets are beautiful and the images and the information that is shared is having a positive impact on both medical providers while also being the kind of information mothers say they want to receive.

  10. Amy Geoffroy says:

    Amy, at Down Syndrome Pregnancy, we also have a brand-new resource written for friends and family members of expectant or new parents. Your Loved One Is Having A Baby With Down Syndrome. http://downsyndromepregnancy.org/wp-content/uploads/2012/02/Loved-Ones-Booklet-DSP.pdf.
    Beautiful pics, advice on how to support parents,what to say and what not to say etc.

    Thanks for all the work you do to share your experiences and make thoughtful arguments that challenge society’s ideas about ds.

  11. Thank you Amy Julia for hosting Stephanie’s post about these
    wonderful resources. As a patient who
    received a prenatal diagnosis from my doctors over 7 years ago, I would have
    been so grateful to have had these resources at that time. Unfortunately, I was
    given nothing, which left me researching from a cold start at a time when I was
    extremely emotional.

    When I first saw the “Understanding a Down Syndrome
    Diagnosis” booklet I was so excited to finally see the information I would
    have needed at that time, along with the gorgeous photography of people with
    Down syndrome. Having had many discussions with women in a decision-making
    stage, I know that in addition to having accurate information, two things are essential to information being
    absorbed by readers making decisions: 1) credibility in the eyes of that reader;
    and 2) a respect for that reader as someone in that decision-making stage. Without these things, information is
    circumspect in the eyes of that reader.

    Who is the audience for the booklet? The audience are
    patients in their doctors offices, finding out about a diagnosis. For most of these patients, termination is
    not just an option, but a very real probability. What information does the
    booklet provide about this option? It acknowledges the option, and gives
    patients the information that termination is for most not an easy road, which
    is what the research indicates. By acknowledging the status of that reader
    where they are (not where someone else may want them to be), and preparing them
    for the perhaps unforeseen difficulties involved in termination, the reader is both respected and the
    information provided is much more credible.
    It is all about that audience – that reader – that patient on the table
    or in the office.

    Many of us have concerns about the future in this new age,
    about the place for people with Down syndrome, about great question of ethics, morality,
    discrimination. But as someone who was
    on that table, and who has talked to so many during that critical time, those
    patients do not care about these bigger questions. Bringing them to the
    discussion with that patient – either directly or indirectly – will make us
    alienate those readers. They are
    concerned about their futures, their child, their family, their choice – giving
    accurate information about Down syndrome which is audience-appropriate is a
    challenge which “Understanding a Down Syndrome Diagnosis” meets both
    successfully and beautifully.

    After receiving this booklet from a health care provider and
    reading it, the reader may choose to read more – Brighter Tomorrows,
    DownSyndromePregnancy.org, the Baby Center DSP board for interactive support -
    based on the need for more information. Or they may choose resources because
    they affirmatively decide to continue the pregnancy, or like me they always intended
    to continue. At
    DownSyndromePregnancy.org we have audience-appropriate materials for expectant
    parents in that long stretch between diagnosis and delivery, including a
    pregnancy book, a booklet for relatives and friends, and topic-driven blog
    posts with community input.

  12. Amy Allison says:

    As the Executive Director of the Down Syndrome Guild of
    Greater Kansas City I receive phone calls regularly from prenatally diagnosed
    parents who are in the decision making process. It is not my role to pressure
    them to continue a pregnancy or to tell them they have only two options
    (parenting or making an adoption plan) when they in fact have three options. It
    is my role to provide them accurate and up to date information, offer to match
    them with a family to learn more and to answer any questions they may have.

    Just last week an
    OB/GYN office called me and indicated a couple was 13 weeks along and receiving
    a positive diagnosis. The doctor indicated the couple would be in their office
    for a bit with an interpreter and asked me to come down immediately to share
    information with them about Down syndrome as they had some inaccurate
    perceptions about the condition.

    The doctor was thrilled when I arrived 20 minutes later with the Lettercase
    Understanding a Down Syndrome Diagnosis booklets in hand. Not only because the
    information is provided in both English and Spanish, but because the booklet is
    non-directive and offers couples balanced information on ALL OF THEIR OPTIONS.

    The DS Community has criticized medical professionals for
    years because they share no information on Down syndrome, or inaccurate
    information, and rush to judgment often encouraging parents to terminate their
    pregnancies. We have lambasted medical professionals for
    not talking about the options of continuing a pregnancy and making an adoption
    plan. We finally have a fair and balanced brochure that is endorsed by medical
    professionals that they are comfortable disseminating. It is disingenuous to
    say this brochure should never mention termination as it’s one of three options
    available to parents when they receive a prenatal diagnosis. A physician’s role
    is to present all options for treatment to patients and to allow them to make a
    decision on how to proceed.

    DSG regularly reaches out to medical professionals to
    provide ongoing training and education. We also respond to urgent calls like
    the one I received last week. Providing balanced and non-directive information
    is the best way to ensure those calls and trainings continue to happen. The doctor last week was confident the
    perspective parents believed outdated stereotypes and had no information regarding
    the true quality of life or people with Down syndrome. How wonderful is it that
    this OB/GYN felt comfortable enough to pick up the phone, share that
    information with DSG and invite me into the exam room to make sure this couple would
    truly make an informed decision on how to proceed with their pregnancy? What
    happens now is not up to me or the OB/GYN, or the DS Community. It’s up to the
    parents.

    • When a woman is pregnant there are now at least two patients – the woman and her unborn child/ren. How does abortion “treat” the baby?

      Twenty-three years ago I had a baby prenatally diagnosed with spina bifila. Did you know the quickest way to find spina bifila and Down syndrome in most books about pregnancy is to look in the index under A for abortion? What does that tell you about how valued their lives are? I think women are well aware of the option of abortion. What they are not so informed about is exactly what will happen during an abortion or how it will affect them and their relationships.

  13. If the Down syndrome community wants to be treated as equals, then we need to say that a prenatal diagnosis of Down syndrome is not a valid reason for taking the life of another human being. That is why we shouldn’t endorse resources that mention abortion as an option following a diagnosis. The current status of the law doesn’t mean that we shouldn’t advocate for our community to free from discrimination through birth prevention programmes. This is a social justice issue for our community and we needed to oppose eugenics. All of the great social justice issues have involved repealing discriminatory laws, so saying we endorse choice because that is the law fails to advocate for our children and is a cop-out. William Wilberforce faced this same resistance to change when he fought for the abolition of the slave trade.


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