Evidence-Based Standard of Care

I was looking at blogs the other day, and came across the link to this webpage, by the mother of a child with Down Syndrome. It’s an excellent perspective, and regardless of your feelings on abortion, you should read it, because it touches on so many different aspects related to pregnancy and birth.

She writes that when her daughter was born with Down Syndrome (I assume she had not had any prenatal testing, because it sounds like her condition was a complete surprise at birth), she and her husband were only give the negative aspects: early death, mental retardation, heart defects, leukemia, Celiac disease, and developmental delays.

Despite the hundreds of thousands of people with Down syndrome in America, even the medical professionals didn’t seem to know much about it.

She goes on to talk about her daughter’s development — normal in many ways (says ‘no’ with gusto, like any other 26-month old), and delayed in other areas (didn’t walk steadily until just a few months ago):

In other words, she has Down syndrome, and she is developing, in many ways, like any other child.

This mother talks about the hurt she feels — as if they are rejecting her child — when they ask about the likelihood of her having another child affected by Down syndrome:

Asking whether I am at risk for having another child with Down syndrome (and statistically speaking, the answer is yes, my “risk” is 1 in 100), is akin to asking whether I am at risk for having another child with brown hair, with gorgeous green eyes, with her father’s hand-eye coordination or her mother’s love for books.

Then she talks about the “standard of care” of obstetricians — that ACOG has suggested new ethical recommendations that, not only should all doctors screen all women for Downs and other conditions, but that if they do not perform abortions, then they should refer the women to someone who does. They phrase it in terms of “personal beliefs deviating from evidence-based standards of care.”

I will grant that performing abortions or refusing to perform abortions is based on one’s personal beliefs; but that it is “deviant” to refuse to perform an abortion? What is the basis of evidence to promote elimination of children with Trisomy 21 (Down syndrome)?

I understand that many women face unbearably difficult choices in regards to the health of their babies. Some choose to terminate pregnancies because they have been given information about the near certainty of physical abnormalities leading to their child’s early death. And yet many women choose to terminate a pregnancy based upon probabilities, fear, and misinformation.

It is this misinformation which is truly the heart of the problem! This mother says that many women are given only the same incomplete information that they were given when their daughter was diagnosed; and as a result some 85% of women who receive such a diagnosis will have an abortion. Yet she writes of the much better outlook that babies born with Down syndrome have now, as opposed to a generation ago.

I also wish that “evidence-based standards of care” included evidence of the potential for children like Penny. I wish it included not only a list of all the medical problems she could face, but also the joy she could bring and the abilities she could have. I wish it included the stories I learned many months after she was born, stories about kids and adults with Down syndrome who played on Varsity teams in high school, competed and won national art competitions, swam across Lake Tahoe.

Here is the problem — when people are only told one side of the story, they are lacking the balanced perspective they need to truly make an informed decision. This goes for prenatal testing as well as for every other area in life. I’ll pull a recent example from my own mental cogitations about breech birth. In the past couple of months, I’ve read numerous stories about vaginal breech birth, and all the stories have been positive with happy endings. Except the last one was of a midwife who had never attended a breech birth before, and in the course of a couple of months attended the births of two breech babies who both died during birth. While I still am in favor of vaginal breech birth under certain conditions, these unhappy endings showed most dramatically that not all breech births end well. Neither vaginal breech birth nor C-section is a choice to be made lightly, but to only hear one side of the story is to only hear a half-truth, which in many cases is not “truth” at all. It is true that most breech babies born vaginally do just fine; but not all do. It’s important to get both the risks and benefits, the good and the bad, the pros and the cons of every decision — as well as the likelihood of these things happening. Yes, some children with Down syndrome are very severely affected and even die in infancy because of their condition; but most do not, and the overall prognosis is good. To get only the negative is to get only half the story.

Some people only hear that “there is a possibility that…” — well, one in a million is still a possibility! There is a possibility that the next time you get in a car, you will be involved in a fatal accident. Will that keep you from going grocery shopping? Or does the benefit of not having to walk for several miles with bags of groceries outweigh the slight risk of a car wreck?

So, the moral of the story is, if you are told only the risks or only the benefits of something, seek out “the other side of the story.” Find out for yourself if the risks are really that bad, when compared to the benefits.

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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.

Gotta love the British understatements

I think I may have blogged about this before — that of the British baby named Brandon who was diagnosed prenatally with a rare brain disorder, and doctors declared that he would be blind and deaf and only live a few hours. But he’s not blind nor deaf, and very much alive. An MRI done after he was born shows that his brain is perfectly normal.

This is what the mother has to say about the prenatal diagnosis:

Perhaps doctors shouldn’t put so much confidence in scans.

Excess Preventable Mortality?

One of the claims the anti-homebirth people (embodied in Dr. Amy Tuteur) make is that homebirth has a high rate of excess neonatal mortality which could have been prevented. Does it? From the CDC statistics, Dr. Amy has noted that the home births attended by “other midwife” have 1.15/1000 neonatal mortality, as opposed to hospital births attended by CNMs which have 0.37/1000. You can search my blog for other related posts, because I have written about this several times, but now I want to focus on one particular aspect — that of this apparent excess mortality being preventable.

For my purposes, I pull four causes of death from the CDC stats: anencephaly, thanatophoric short stature, Edwards’ Syndrome, and Patau’s Syndrome (in the “causes of death” codes, these are Q00.0, Q77.1, Q91.3, and Q91.7, if you wish to double-check me). Although there are many causes of death due to genetic or congenital reasons, these four all carry a near-100% neonatal mortality rate — that is, almost all of the babies born with these conditions die within the first 28 days, if they survive pregnancy and birth at all. (There may be other similar conditions, but these were the first that I found that all had this high neonatal mortality rate.) In fact, in quickly reading about these conditions, I discovered that in many cases, doctors refuse anything but palliative care (nutrition, hydration, etc.) for these infants, contending that any care such as surgeries is a waste of time, because they are believed to be hopeless and/or better off dead. Some even argue for euthanasia, just in case “natural processes” don’t kill these babies quickly enough.

So, being born in a hospital does not necessarily even lengthen the lives of these babies; and since stillbirths aren’t counted in these statistics, it’s anybody’s guess as to how many babies were conceived and were not aborted. (This website says that 95% of babies known [or suspected] to have anencephaly are aborted, while 55% of babies who are not aborted are stillborn. It also calls into question some of the accepted medical “facts” about anencephaly — that these babies can’t see or hear or feel — because of the life experiences of such parents. The longest-living baby with anencephaly in the U.S. is “Baby K” who survived two and a half years; and it’s possible that the true life expectancy of such babies is much longer than most doctors allow, if better medical care were given.) Most of these conditions can be suspected or known by prenatal genetic or ultrasound testing, and abortions are not counted in perinatal statistics, since they are intentional deaths, and perinatal mortality counts only unintentional deaths. What is not clear to me is if so-called “live birth abortions” or preterm inductions of labor are counted in these statistics if the baby survives the birth process and then is allowed to die without medical care; or if all of the preterm births in the statistics are from women who naturally went into labor prematurely.

Of the term group, the total neonatal mortality rate for just these four causes of death was 0.12/1000 in the CNM+MD+DO group, vs. 0.21/1000 in the “other midwife” group. Now, when I previously blogged about the high rate of definitely unavoidable or possibly unavoidable death in the “other midwife” group (including these deaths, as well as deaths due to conditions which may or may not be lethal depending on severity), Dr. Amy insisted that the inference she drew (that of DEM-attended home births having 2-3x the rate of neonatal mortality of CNM-attended hospital birth) were valid, and “the only people that don’t understand it” are home-birth advocates. I actually understand what she is saying very well, I just happen to disagree with her shallow assessment of the data.

Looking at just these four causes of death in the 37+ week group (for all women, not just non-hispanic white women giving birth to babies weighing 2500+ grams), the neonatal mortality rate in the CNM group is 0.06/1000, whereas in the “other midwife” group it is 0.21/1000. If there can be any sort of statistical inferences drawn from this, and since these deaths are unavoidable, it seems logical to assume that either more affected babies make it to term in the home-birth group (either because of a lower rate of abortion or preterm induction, or more women who choose hospital birth naturally go into premature labor), or more babies survive labor in the home-birth group. (It only makes sense that there would be a lower rate of abortion in women planning home-births, since many women cared for by midwives decline prenatal testing that can reveal an affected baby, so they would not have an abortion since they don’t realize their baby has a lethal defect, although even some nominally pro-life women will have an abortion or a “live-birth abortion” when faced with this news.) Dr. Amy either can’t or won’t understand these life-and-death issues, although they are plain to see. We know that a certain percentage of women will have an abortion when they find out their child has some birth defects, such as chromosomal abnormalities like Down’s, Patau’s, or Edwards’ Syndromes, or congenital birth defects like anencephaly. Many women will have an abortion if they merely suspect these conditions. But women who decline prenatal testing will not suspect that they are carrying such babies, and will not seek abortions.

So I say that the evidence strongly suggests that the 0.21/1000 neonatal mortality rate in the “other midwife” group for these 4 conditions, as compared to the much lower rates in the term period of the CNM group, or the combined hospital-birth group, reflects the true incidence of mortality from these conditions, because the hospital-birth group has numbers which are artificially lowered because of abortion, or perhaps a higher rate of stillbirth.

It’s also possible that women who find out that their babies have a lethal genetic or congenital condition seek out midwifery care, or that women who are more likely to have an affected child seek midwifery care. For instance, if women are uncomfortable with prenatal screening (such as the risk of miscarriage for amniocentesis), but their doctors try to force it on them anyway (which happened to a friend of mine who ultimately chose a home birth), they may “jump ship” and just totally avoid the medicalization of both pregnancy and birth. Even though this friend gave birth to a perfectly normal child, she was nearly 40 so was at a much higher risk of having a baby affected by a genetic condition. But she didn’t want to be pressured by the doctor to take a test that she just did not want to do — she wouldn’t have had an abortion (although she is “pro-choice”), and her two other children had special needs, so she knew what she was getting into. There is also the possibility that women who find out that their babies are negatively affected are pressured by their doctors to abort (I’ve heard of women being forced to undergo psychological counseling because they refused an abortion), and they similarly “jump ship” to midwifery care, rather than to stay with the doctor who wanted them to murder their unborn child. Who can blame them? Would you really want to continue your pregnancy and give birth under the “care” of the man or woman who wanted your child dead?

But, even if there are cases not as extreme as that, if you find out during pregnancy that your baby is certain not to live, and is expected to die before labor, or almost certainly during labor, might you not seek to give birth at home without all the hospital intrusions and protocols? — at home, where you can call the shots? where you don’t have to worry about seeing dozens of other women in labor or with their perfect newborns, when yours has a lethal condition? where you don’t have to leave the hospital with empty arms, while everyone else goes home with a living baby? where you can spend as much time with your dying or dead baby as you want to, without being rushed by busy nurses who need to process your baby and paperwork?

So I say again, as I’ve said before, we need to look at the facts behind the bare numbers. The neonatal statistics don’t take into account abortions for known or suspected fetal anomaly; and I think it’s pretty obvious that home-birthing women are less likely to have an abortion than the hospital population. Babies who are known to be affected are also more likely to be born by pre-term induction (“just getting over with the inevitable”), which would cause a marked difference if you look at just term births. If 95% of the known affected babies in the hospital group are either aborted or induced pre-term, then very few make it to term, as opposed to most of the affected babies in the home-birth group. (Probably a slight exaggeration… for the point of clarity.) But this would definitely alter the statistics — and we see a difference in statistics in term births.

But these deaths are unavoidable, and the question concerns preventable neonatal mortality. There are only two things that would prevent the neonatal deaths of these babies born with lethal birth defects — their death prior to birth, either by abortion or stillbirth, or intense medical care to prevent their natural deaths from the numerous things that may be wrong with these babies (many affected babies have multiple abnormalities). Not all babies with these conditions die in the first 28 days, even without heroic measures. Some babies live much longer than expected, lasting even a few months or rarely a few years, with just a little bit of medical help (such as extra oxygen, if their lungs or breathing is affected).

But it is disingenuous to say that home-birth has a higher rate of preventable mortality when a great percentage of that excess mortality is not preventable.

Be Not Afraid

In my most recent post, I linked to a story of a woman whose baby was diagnosed by ultrasound with severe fetal anomalies, and given zero chance to live — if he made it to term, he likely would die in birth; if he made it through birth, he likely would die soon afterwards. Every doctor she saw counseled her to have an abortion. I thought at the time of the post, that the website (Be Not Afraid) was her particular site or blog. I have since read through more of it, and have found that this website actually “is an online outreach to parents who have received a poor or difficult prenatal diagnosis.”

There are numerous stories on this site, covering a wide range of experiences. The one thing they have in common, though, is that all of the women and couples chose not to have an abortion, although they were counseled to have one. Some of the stories include inaccurate diagnoses, babies living just a few minutes (which was longer than the doctor’s predictions), and most of all just loving the babies that they grew in their wombs.

Here’s a similar story from a different website. I’m including it, because of the woman’s pregnancy and birth story (hint — she fired her doctors and went to a midwife).

I’ve read a story of a woman who had an abortion (technically, a preterm induction — labor is induced before the baby is old enough to live, and no attempt at resuscitation nor life-saving measures are employed) after finding out her son had severe disabilities and would not survive to term; or if he did, would not survive birth; or if he did, would not survive long after birth. She said that she had no choice but to terminate the pregnancy — she couldn’t bear the thought of continuing to grow her baby in her womb, all the while knowing he would die. As is shown by many of the stories on the Be Not Afraid website, most doctors will fully support the choice of abortion, but will not fully support the choice of continuing the pregnancy. (Is it really a choice, then? — when only one option is truly available?)

If you are being faced with this choice, my heart goes out to you. I urge you to consider all of your options, including the fact that prenatal diagnoses may be wrong. If you are being faced with this choice, and you want to continue your pregnancy while everyone else around you is urging you to have an abortion and “just get on with your life” or “have another baby — one without defects,” then I beg you to seek support. You are not alone. You are not the only person to have faced this. You will not be the only woman to have chosen to keep nourishing and growing her baby in her womb, even when all the “experts” say it will be better for you to stop. Even if your baby has only a slim chance at life, abortion reduces that chance to zero. Even if your baby dies soon after he is born, he will live longer than he would have if you choose to abort.

Here is support, if you want to reach out for it.

Love to Last a Lifetime

Please read this story of a couple who chose to carry their baby to term, despite knowing he could not live past his birth. An ultrasound revealed abnormalities, and a prenatal genetic test confirmed a fatal defect. Their first doctor suggested an abortion, but they chose life for their son–even knowing he might not live until his birth, and certainly couldn’t live beyond it. They chose to love baby Zeke as much as they could for as long as they could. A beautiful but heart-breaking story.

My thanks to Real Choice for bringing it to my attention.