Defiant Birth

I read about this book in the New Zealand College of Midwives’ Journal, and it intrigued me — Defiant Birth: Women Who Resist Medical Eugenics. Essentially, it is a book about women who either give birth after having been pressured to have an abortion because of a fetal anomaly, or refused such testing altogether. While the person writing this review criticized the book for not including any stories of women choosing an abortion, the whole point of the book is one of defying the medical community and giving birth to babies that most women would abort and most doctors would encourage to abort. The whole point of the book, evidenced by the title, is that it is about women who refuse to kill their offspring for medical reasons.

It is my opinion, based on years of being on pro-natural- and pro-home-birth lists, that women who tend towards natural (meaning, unmedicated, not just vaginal birth) and/or home birth tend to avoid prenatal tests and screens, including ultrasounds, which may indicate a problem with the baby before it is born. Also, women who are so strongly pro-life that they would refuse an abortion regardless of the prenatal diagnosis would be more likely to decline any testing. [If any of you know of any research done on this topic, please let me know, because I’d like to know if my opinion is accurate or not.]

The down-side of refusing tests is that if there is a problem (which is, fortunately, rare), then it is not known prior to the birth, so the parents cannot prepare for a child with disabilities or one who needs medical care. Many parents, and it is especially the mothers who write about it, talk about being grateful for knowing of their child’s circumstances prior to the birth. One reason given is that it made the time of pregnancy more special for them, knowing that it would be the bulk of the time they would have with that child. They made more effort to bond with their baby prenatally than they otherwise would have. While it was difficult for them to continue the pregnancy knowing that their baby could die at any moment, and would most likely be stillborn, or die soon after birth, they found joy where they could, and loved their babies as long as they did live. Another reason given is that knowing the condition beforehand gave them the opportunity to better prepare for the baby’s birth (and sometimes immediate death) — either by having a birth plan with specified medical care, a team of specialists to help the baby live, or being able to mentally and emotionally prepare themselves for the grief of losing a child.

The downside of having the tests is that there are false negatives as well as false positives, and if you receive a negative result (that is, that your child is not affected) and at birth you find out that he or she is affected, then you will been given false assurance that everything is normal. If you have a positive result (that your child does have something), then your pregnancy will be much more stressful than it otherwise would have been. While some of that stress may be related to finding out everything about a certain condition, there is undoubtedly stress just in dealing with that condition. One of my friends had a positive result from a screen she had in early pregnancy, and although she chose not to have an amniocentesis to confirm or disprove that potential diagnosis (because of the risk of miscarriage, and the certain knowledge that she would not abort her baby even if he did have something), she did have a more stressful pregnancy with him than with his older brother, because of the worry that the test raised. It was needless worry — the baby was just fine — but it was many months of concern, nonetheless, even though she knew that most of the positives from this screen were false.

While most abortions done for a negative prenatal diagnosis (that is, the baby is said to have a certain condition which will result in his death in utero or soon after death, or will survive with disabilities) are accurate, a small percentage of healthy babies are aborted, or the condition was not as bad as it was thought to be, when the fetus was given an autopsy. If you have been given a difficult diagnosis, and are thinking of having an abortion, please get a second or even a third opinion. While it is rare, I have read of women who have been told that their babies were missing organs (kidneys or even the brain), and after the baby’s abortion or birth, it was discovered that the diagnosis was wrong. Since most of these diagnoses are done by ultrasound, it all depends on the sonographer’s skill and equipment. But even highly-skilled doctors can make mistakes.

I’ve mentioned it before, but I’ll tell it again — a woman on one of my lists was told when she was at or near term that the ultrasound showed her fetus didn’t have Down Syndrome nor have any heart problems (and this was a 90-minute-long Level 3 ultrasound), and the baby died just a couple of weeks later, of the heart problem she supposedly didn’t have, and she also had Downs. The woman said she was glad that the incorrect diagnosis was given, because although she was falsely assured, it at least kept her baby from multiple surgeries which would have done no good, but which she would have been pressured into having her get “just in case.” She would have been pressured into inducing or having a C-section, and the baby’s short life would have been spent in operating rooms and in pain, to no avail. As it was, her entire life was spent in the comfort and safety of her mother’s womb.

Often when such a diagnosis is given, the woman is immediately pressured to have an abortion. Perhaps the word “pressured” is too strong in some cases — it may just be asumed that women will have an abortion (or pre-term induction), rather than carry the baby to term. Here is one such case — the woman had her first ultrasound at 31 weeks, and it was discovered her baby had anencephaly. Immediately after the diagnosis…

My doctor had proceeded to tell us there was a room upstairs to start an induction. She never asked me or had said go home, rest, make an informed decision when you are thinking clearly. I don’t blame her, I had free will, but she now knows how important it is for her to tell patients they have a right to make an informed logical decision regarding inducing early or carrying to term.

The induction didn’t work, and after three days of waiting for contractions to start, she finally decided just to go home and continue the pregnancy, and carry the baby to term.

Our reaction to our son was that of complete awe. He was anencephalic and he was indeed beautiful. He had so many resemblances to our family, it was uncanny. He had my husband’s thin lips, his wonderful cheeks, chin, and nose. His eyes were a bit bulgy, that is due to the orbital bones not forming correctly, but the same deep brown eyes all my children share.

Then there is this story, in which the mother had declined the quad screen because of the level of inaccuracy in it, and wouldn’t have an amnio because of the risk of miscarriage, but she did have an ultrasound, where it was discovered the baby had so many problems, that she just kept hearing them say “and… and… and…” They counseled her to have an abortion, which she naturally refused being very pro-life, but eventually consented to an amniocentesis, because the after-birth care her son got might depend on the answers an amnio would give them. [As an aside, I will point out that when her husband left the room while they were prepping her for the amnio, they pressured her to have an abortion, saying that it was her decision and not her husband’s. As if the only valid “choice” they perceive would be to have an abortion.] The results for the amnio were that the baby did have Down Syndrome, and they counseled her again to abort, because that, combined with his other ailments, meant that he would not live much past birth. When she declined yet again, they offered her a pre-term induction. After it was explained to her that she would be induced before the baby was old enough to live, she said, “That’s the same thing as an abortion,” and told them “no” once more. Good for her! Read the rest of this amazing story here. While her adorable little boy does have Down Syndrome, he defied the prognoses and instead of dying within the first few hours or days of life, is now one year old.

I’m not saying it will be easy to be “defiant” in the face of such pressures. Women “over a certain age” will be strongly pressured and coerced into having tests and screens to see if their babies are affected. All women, regardless of age, will be pressured into having an abortion or pre-term induction if the test results indicate that the baby has a defect. Sometimes even minor, correctable defects like a cleft lip or cleft palate will send some women to an abortionist. But when the baby has a genetic condition or severe heart problems or anencephaly, the pressure to abort will be very strong. It is almost assumed that you will abort — by your doctors, and perhaps your friends and your family — such as what happened to a woman whose blog I happened across. She is currently pregnant with a daughter with congenital diaphragmatic hernia, which may kill her soon after she is born. The woman needed support, and her mom and dad both told her to have an abortion. But she is choosing to let her daughter live as long as possible, and is going to love her as long as possible. I admire her.

If you have been given a poor prenatal diagnosis, you need to consider all your options. There are many support groups, especially on-line, that you can talk to as you go through this. Abortion is not the only answer. Even if you think you cannot raise a child with a disability, there are many families who will adopt special-needs children. Here is one such organization with over 200 families waiting to adopt a child with Down Syndrome. Over on the Real Choice blog, there is a list of websites (below the list of posts, in the right-hand column) that are geared towards helping families when they have been given a negative diagnosis — some are for specific ailments, like Trisomy 13 or Trisomy 18; while others are for all conditions, including being pregnant with cancer, and how to support a friend who has been given a poor prognosis for her baby.

3 Responses

  1. Thank you for including our story in your article. I am truly honored that you mentioned me. Thank you very much for encouraging families who receive an adverse prenatal diagnosis to seek help and support, to stand up to the pressure to terminate, and to “stick it out.” There really is an amazing on-line community out there – parents who are more than happy to share their stories and experiences with families facing similar issues. From my experience, most parents of children with special needs, including ourselves, will tell you, “We wouldn’t trade our child for the world!”

    Amy

  2. […] I was mentioned in an article about “Defiant Birth,” women who resist medical eugenics – who continue pregnancies when pressured to do […]

  3. […] Defiant Birth – an article, which mentions our story, about women who resist medical eugenics – who continue pregnancies when pressured to do otherwise. […]

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