The curious silence on the rising rate of homebirth death

The CDC published an update on homebirth today. Entitled Home Births in the United States, 1990–2009 and written by MacDorman, Mathews, M.S. Declercq, the data brief noted:

• After a decline from 1990 to 2004, the percentage of U.S. births that occurred at home increased by 29%, from 0.56% of births in 2004 to 0.72% in 2009.

• For non-Hispanic white women, home births increased by 36%, from 0.80% in 2004
to 1.09% in 2009. About 1 in every 90 births for non- Hispanic white women is now a home birth. Home births are less common among women of other racial or ethnic groups.

• Home births are more common among women aged 35 and over, and among women
with several previous children.

• Home births have a lower risk profile than hospital births, with fewer births to teenagers or unmarried women, and with fewer preterm, low birthweight, and multiple births.

• The percentage of home births in 2009 varied from a low of 0.2% of births in
Louisiana and the District of Columbia, to a high of 2.0% in Oregon and 2.6% in Montana.

But there's one thing that the data brief didn't mention at all: exactly how many of those babies died?

The authors managed to analyze homebirths by race. They managed to analyze homebirth in each and every state. They managed to analyzed the risk profile of homebirths. But somehow they couldn't manage to check the neonatal death rate for homebirth located on one of the CDC's own websites. They are curiously silent on the most important thing we need to know about homebirth: is it safe?

Had MacDorman et al. bothered to look, they would have seen that the most recent CDC data shows that homebirth with a non-nurse midwife has a neonatal mortality rate 7.7 times higher than comparable risk hospital birth!



This extraordinarily high death rate is all the more remarkable because it actually under-counts the homebirth death rate. That's because homebirth transfers ended up in the hospital MD group and were not counted in the homebirth group. The real number of homebirth deaths is almost certainly significantly higher.

While MacDorman et al. were busily analyzing the state level data, they could have learned that in the state of Colorado, which has licensed homebirth midwives since 2006, the homebirth death rate has exceeded the death rate for the state as a whole (including premature babies and pregnancy complicati­ons) in every single year since and has risen in every single year since 2006, The death rates are so appalling that the homebirth midwives of Colorado refused to release the death rates for 2010. Or they could have learned that the state of Oregon has had at least 19 reported neonatal deaths in the past 10 years for a rate that is more than 4 times higher than the death rate for comparable risk hospital birth.

Every major news outlet has reported on this CDC data brief, and curiously, not one bothered to ask how many of the homebirth babies died. A few news outlets made vague pronouncements that homebirth might double or triple the neonatal death rate, but not a single one bothered to find out what actually happened in the group that MacDorman and colleagues studied.

I'll admit that I'm pretty frustrated by the fact that MacDorman et al never bothered to look at the neonatal death rate, or looked at it and didn't bother to report it. Who really cares that the homebirth rate rose an additional 9% since 2008? Yet somehow MacDorman thought it was critical to report on that. Everyone needs to know how many of those babies died, yet MacDorman couldn't be bothered to report on that.

And I'm also pretty frustrated by the mainstream media. There are no questions, no probing, and no investigation into the number of babies who died. It's as if they don't exist. Journalists just collected opposing viewpoints and wrote "balanced" articles that inexplicably left out the most important issue. And while journalists interviewed midwives and obstetricians, not a single one thought to interview a pediatrician or a neonatologist to determine whether the people who actually care for babies think about the dangers of homebirth to babies.

I'm afraid that the only thing that will shake journalists out of their complacency is the death of a celebrity's baby at homebirth. Sooner or later that is going to happen, and journalists will "discover" that babies have been dying preventable deaths at homebirth all along. Until then, they won't ask the difficult questions; they'll simply accept what they read in press releases and reprint them wholesale.

Preventing maternal deaths

As I've written about repeatedly, natural childbirth and homebirth advocates have made a fetish of maternal mortality. They're not actually DOING anything about maternal mortality, but they are complaining about it and insinuating (or even claiming) that modern obstetrics is responsible for maternal deaths and that midwifery care would lower maternal mortality. But as a paper in the forthcoming issue of Obstetrics and Gynecology reveals, the keys to lowering maternal mortality involve MORE interventions, not fewer.

The paper is Preventing Maternal Death: 10 Clinical Diamonds by Clark and Hankins. The authors write:

The death of a mother during or after childbirth is one of the most tragic events in medicine. We have identified 10 specific recurrent errors that account for a disproportionate share of maternal deaths, primarily related to pulmonary embolism, severe preeclampsia, cardiac disease, and postpartum hemorrhage. Attention to these principles and the development and adoption of local or regional clinical protocols that address these issues will help reduce the likelihood and effect of error and of maternal mortality.

What is a clinical "diamond"?

In medicine, a clinical pearl is a short aphorism meant to assist the clinician faced with a complex clinical situation in cutting to the essence of the matter and making a correct decision... Such "pearls" are intended to be default approaches of high value and low risk that the wise clinician will automatically incorporate into practice as a matter of course, barring some exceptional clinical circumstance.

... We present here 10 such aphorisms, elevated to diamond status by virtue of their ability to prevent what is perhaps the most tragic event in all of medicine and by their universal applicability to nearly every patient, every time.

They are:

1. A pregnant woman with acute chest pain should have an immediate CT angiogram
2. A patient with preeclampsia and shortness of breath should have a chest X-ray immediately
3. A hospitalized patient with preeclampsia and a systolic blood pressure of 160 or a diastolic pressure of 110 should receive an IV antihypertensive within 15 minutes
4. Angiographic embolization should not be used for acute, massive postpartum hemorrhage
5. Any woman with cardiac disease gets a maternal–fetal medicine consult
6. If more than one dose of medication is needed to treat uterine atony, go to the patient’s bedside until the atony has resolved
7. Never treat “postpartum hemorrhage” without simultaneously pursuing an actual clinical diagnosis
8. A postpartum patient who is bleeding or who recently has stopped bleeding and is oliguric, should not receive diuretics
   
9. Any woman With placenta previa and even one previous Cesarean should be delivered in a tertiary care hospital
10. Every labor and delivery unit should have a recently updated massive transfusion protocol
    

In other words, to prevent maternal death from pulmonary embolism, severe preeclampsia, cardiac disease, and postpartum hemorrhage, we need increased use of technology, more treatment with medication, more direct physician supervision and access not only to blood banking but to massive transfusion protocols.

In contrast to the insinuations (or claims) of NCB and homebirth advocates, the solution is NOT "trusting birth," unhindered birth, birth affirmations, nutrition, supplements, chiropractic or indeed ANY care that is exclusive to midwifery.

Maternal mortality is a serious problem that requires serious solutions. NCB and homebirth advocates (like Ina May Gaskin) who exploit this issue for personal gain (and who simultaneously make no concrete efforts to treat it) are worthy of nothing but contempt.

Near-miss maternal mortality

Maternal mortality has dropped 99% in the past 100 years. A maternal death is now, fortunately, a rare event. Attention, therefore, is shifting to maternal morbidity, in particular, life-threatening morbidity. The results of a new study are instructive.

Near-Miss Maternal Mortality: Cardiac Dysfunction as the Principal Cause of Obstetric Intensive Care Unit Admissions by Small et al. will be published in the February 2012 issue of Obstetrics and Gynecology. The title gives away the principle finding; heart disease is the most common cause of maternal ICU admission.

The study took place at Duke University from January 2005 to April 2011. There were 19,575 births and 5 maternal deaths for a maternal mortality rate of 25/100,000. That is approximately double the US maternal mortality rate, but that is only to be expected in a tertiary center that receives the most complicated cases from the surrounding area. There causes of the five maternal deaths were: two from metastatic cancer, two secondary to cystic fibrosis, and one the result of sepsis.

The authors then looked at maternal admissions to the intensive care unit:

Ninety-four obstetric patients—five per 1,000 deliveries—were admitted to ICUs. Eight declined participation in the study. Eighty-six patients were included in this analysis.

... African American women comprised the largest population admitted to the ICU (45%). Significant differences were found by race and ethnicity in the following variables: parity, BMI, and marital and insurance status. African American (mean 35) and Hispanic women (mean 36) had significantly higher BMIs than white women (mean 28). African American and Hispanic women were also more likely to have Medicaid or no insurance and were more likely to be unmarried and multiparous.

The following table shows the reasons for ICU admission.



The authors write:

... The leading admission diagnosis for pregnant and postpartum women was maternal cardiac disease (36%). Maternal hemorrhage (both obstetric and nonobstetric) was the second leading reason for admission (29%). Hypertensive disease accounted for 9% of ICU admissions...

The majority of cardiac conditions prompting ICU admission resulted from cardiomyopathy. Acute complications associated with peripartum cardiomyopathy
comprised the majority of this group. Congenital heart disease is the underlying etiology for many of these valvular lesions and cardiomyopathies. Congenitally
acquired conditions were the second leading cause of maternal cardiac ICU admissions...

The findings of this study are notable for the following:

1. Race is a major risk factor for near-miss maternal mortality.
2. Obesity (BMI greater than 30) is a major risk factor for near-miss mortality.
3. The leading cause of near-miss mortality is cardiac disease.
4. Infection and bleeding account for only one third of the near-miss events.

This paper demonstrates that near miss-maternal mortality, like maternal mortality, is the result of complex medical and non-medical factors. Both race and maternal BMI appear to play important roles. Pre-existing medical conditions account for a substantial proportion of near-miss maternal mortality. The traditional causes of maternal mortality and near-miss mortality have been eclipsed by cardiac complications of pregnancy.

In other words, contrary to the claims of natural childbirth and homebirth advocates, maternal mortality and near-miss maternal mortality are not related to obstetric interventions. The most common risk factor is pre-existing maternal health issues. Women with serious medical problems (including obesity) prior to pregnancy are the ones most likely to develop life threatening medical problems during pregnancy and childbirth.

How student midwives learn

Today's post is brought to you by the student midwives writing on the website sponsored by the Royal College of Midwives. It is an object lesson in what happens when student midwives (and many graduate midwives) are confronted with scientific evidence that does not support their pre-existing beliefs. It's not a pretty sight.

Here's the question posed by the OP (original poster):

article stating 2 in 3 babies stillborn at home could have been saved in hospital

Just wondering what your views are on this article. http://skepticalob.blogspot.com/2011/12/2-out-of-3-babies-who-die-at-homebirth.html

Now let's look at the reasoned discussion that follows, the careful reading of my post, the examination of the underlying scientific literature (the Birthplace Study), and the mathematical analysis of the data.

P:

Dr Amy talking about things she doesn't understand again

V:

This woman does my nut in

Li:

I really don't understand the idea "0 out of babies Bjorne in hospital could of been saved at home' she seems be choosing to ignor all the evidence re hospital birth being more likely to led to intervention and then all the associated risks off that...

Does rub me up the wrong way when people who should know better choose to take one small piece of evidence and ignore the rest

Lo:

Only read a tiny bit so far but I'm puzzled by "3 times (200%)". Can someone explain this to me? 1 times 1 is 1, which is 100% of 1. So presumably 200% of 1 is 2, and therefore three times 1 is 300%? If that makes any sense.

R:

I agree.

S:

Dr. Amy's blog is a waste of time, she likes to skew numbers and reports, while ignoring any evidence that what she is saying isnt true. Homebirth in the USA is not as safe as other countries, however painting homebirth in general with the same brush is irresponsible. Esp considering the USA's high mortality rates.

B:

Was going to read this then saw who wrote it and changed my mind.

M:

Agreed, I don't need the anger in my life from reading posts by this woman. Gets me worked up just thinking about it!

Original poster:

yeah it is an absolute load of rubbish but i thought it would bring an interesting discussion/debate which hasn't happened... as everyone thinks exactly the same lol x

And that's how student midwives handle information that challenges pre-existing beliefs. Very instructive!

Narcissism and homebirth

Those who were following the blog comments over the past weekend were treated to a display of narcissism so outsize as to astound nearly everyone who observed it.

I am talking about a series of comments made by a homebirth mother who tried to convince us that her baby chose to die. And, if that's not bad enough, her baby chose to die as a gift to her.

I wrote about the homebirth death nearly a year ago (Sure my baby died, but look at the benefits to me). Apparently the mother found the post a few weeks ago and has been writing about it on her own blog. I was aware of the mother's blog posts and I was aware of her post on Mothering.com soliciting support. I did not comment in either place, but then she came here looking for support.

Although the mother deleted her original comment, most of it can still be found on her own website.

... Joseph showed me the true meaning of unconditional Love. I feel like he gave his life to deepen mine, to give me back to me and to help me really discover my drive and purpose in life...

She was initially ambivalent about this pregnancy, because her first child has cystic fibrosis and she knew she was at risk for having another child with CF. However, she took no steps to determine if the baby was affected.

Moreover, despite knowing that her baby might need extra help at birth, she decided to give birth at home with a direct entry midwife. Babies with CF are almost always born without any sign of CF. Her baby's death at home was the result of lack of oxygen during labor, and the midwife's inability to perform an expert resuscitation.

Fast forward 9 months, Joseph is born, at home and is not breathing... Here is what happened as far as we can tell: he pinched off his umbilical cord with his own hand during the final minutes of delivery.

This in and of itself is HIGHLY symbolic for me and my family. It was not an "accident" that killed him, he LITERALLY cut off his own air supply.

Claiming that the baby could cut off his air supply by squeezing the umbilical cord makes as much sense as claiming that a baby cut off his air supply by squeezing his own neck. No baby is strong enough to do that, and, even if he were strong enough, he would pass out and drop the cord.

As I have written many times in the past, homebirth is a piece of performance art with the mother as the star of the production. Everyone else, including the baby, is a bit player. Going so far as to claim that the baby's death is just a particularly extreme example of regarding the baby as nothing more than a prop, but narcissism lurks at the heart of most homebirths.

The narcissism expresses itself in many forms:

• Homebirth advocates typically refer to the birth as "my" birth, "my" healing journey an "my" triumph ("I did it").
• Intuition, and birth affirmations, are forms of narcissistic expression. Only a narcissist believes that her thoughts have the power to control outcomes.
• It takes a certain level of narcissism to believe that you know more about childbirth than the professionals who have spent 8 postgraduate years studying and practicing obstetrics. It takes a certain level of narcissism to pretend that you can acquire the relevant information by reading internet blogs and publications written by other lay people.
• Homebirths are invariably displayed. Although homebirth advocates pretend that the rationale for homebirth is to have a private, spiritual experience, they tape it and post it on YouTube for any stranger to watch.
• Some homebirth advocates are so narcissistic that they demand attention in real time. Hence live-tweeting, live-blogging and live-video feeds of homebirths.
• In their narcissism, those who display their homebirths to strangers fantasize that they are doing so for the benefit of others; they are "educating" them about what a natural birth looks like, as if births in nature took place in inflatable kiddie pools with state of the art video equipment recording them.
• Claiming that some babies are meant to die is narcissism in its purest form. It's a way of shedding responsibility in advance for not doing everything possible to prevent a death, and shedding responsibility in the aftermath of a death by pretending that nothing could have been done to change the outcome. The baby exists only as a bit player whose own needs, even the need for oxygen, can blithely be ignored.
  

Ultimately, homebirth is about the mother, her feelings, her experience, the way that she would like to view herself. The baby is nothing more than a prop. Of course most women can be jolted out of their narcissistic complacency if the baby dies. But apparently not everyone. Occasionally there is a case of narcissism so severe that the mother actually thinks the baby died as a favor to her.

It is my fervent hope that this mother seek professional psychological help to process this tragedy, both for her own sake, and for the sake of her husband and surviving child. With therapy she may be able to see beyond her own needs to the fact that others are people with needs, needs that ought to be acknowledged and respected.

The Sanctimommy Manifesto

I've been writing about sanctimommies for a number of years now, but only yesterday did I learn that there is sanctimommy manifesto and it's a festival of stupid.

What is a sanctimommy?

The sanctimommy knows how you should raise your children. Specifically, she knows what foods they should eat, what toys they should be allowed to play with; heck, sanctimommy even knows how you should have given birth...

The newest sanctimommy on the block is Darcia Narvaez, PhD. Writing in Psychology Today, Narvaez has produced a sanctimommy manifesto, Do We Need a Declaration for the Rights of the Baby? subtitled 'What do babies have the right to expect?'

Who is Narvaez and what are her qualifications for opining on the rights of babies? She doesn 't have any. Narvaez is an Associate Professor of Psychology and Director of the Collaborative for Ethical Education at the University of Notre Dame. Her research explores questions of moral development. In other words, she has no training at all in pediatric health, obstetrics, nutrition, but hey, when you're a sanctimommy your sanctimony is all you need!

Dr. Narvaez doesn't merely what her real or theoretical children need, she knows what YOUR children need.

• Natural birth.
• Intentional beginning
• No induced pain.
  
• Breastmilk on demand for several years.
  
• To have intensive maternal contact from birth with separations only initiated by the child.
  
• Deep bonding.
  
• To be treated as a person.
  
• Needs respected and met.
  
• Appreciation through positive touch and nonverbal and verbal communication.
  
• To be embedded within the activities of a family 24 hours a day.
  
• Community care.
  
• Keeping their autonomy.
• Keeping their spirit.
• Full sensory and intellectual development.

In other words, babies have the right to attachment parenting!

Ms. Narvaez, as is the habit with most sanctimommies, insists that these aren't her ideas; they're simply what "science" shows is best for babies:

But now we know quite a bit of what helps babies thrive, what helps their brains and bodies grow well, and what facilitates optimal development. We can learn from societies that have happy, cooperative, intelligent children.

There's just one teensy, weensy problem. The scientific evidence does NOT support Narvaez' claims. Let's look at a few of her claims in detail to see what I mean. Narvaez says:

Natural birth. The baby should be allowed to arrive in the new world on his or her own time, not on the doctor's or mother's timetable. This means avoiding inducement of labor and avoiding cesareans except in emergencies and preferably past full term (40-42 weeks). This also means maternal self-governance instead of relinquishing control of the birth to medical personnel. Mothers should follow the deep, primal instincts that positively guide healthy childbirth (with a birth plan for emergencies) and that provide the needed hormonal boost for caring for the newborn afterwards. Mothers and babies should not use drugs and fetal monitors, but instead using natural approaches to easy delivery.

In others words, Narvaez advocates just what they did in "the good old days." And how did that work out? Not particularly well for either babies or mothers. Back in the good old days, 10 times as many babies died in or near childbirth as today; 100 times as many mothers in or near childbirth as today.

Intentional beginning. The birthing environment should mimic the womb as much as possible (warm temperature, soft lighting, no strong sensory input). There should be no procedures that cause pain to the newborn (separation from mother, eye drops, cloth rubbing or wrapping). First impressions on a dynamic system (the baby) shape the trajectory in development of that system--in many ways initial conditions cannot be changed later. The first impression should be one of pleasurable gentleness and loving support, to jumpstart prosociality.

There's no scientific evidence for any of that other than a warm environment, and no reason to believe that it is true. Moreover, if you take it to heart, mimicking the womb does not lead to "warm, temperature, soft lighting and no strong sensory input." It leads to intubating a baby, dropping it into a pool of water, leaving it in the dark and feeding it by IV.

Breastmilk on demand for several years... Breastmilk not only builds the brain, body, immune system, it has longterm delayed effects, such as the timing of puberty (delaying it in comparison to infant formula which speeds up pubertal timing)...

But that's not what the scientific evidence shows. Virtually none of these purported benefits are established science, but rather suggestive results of selected studies, much of which is contradicted by other scientific studies. In addition, even if the benefits are real, most are quite small, and not even clinically relevant.

I'm beginning to detect a pattern here: Dr. Narvaez is offering her personal opinions, claiming (erroneously) that they are supported by scientific evidence, and insisting that babies have a right to expect that their parents will follow this evidence. Too bad that Narvaez is so eager to promote her personal opinions that she ignores her own advice, given in a different article:

But even more important for parents of young children is to realize that there really aren't any human experiments that can be done to inform you how to parent at any given moment. So, for example, experiments that show the "success" of cry-it-out parenting might be interesting but they have several flaws.

Science cannot recommend particular parenting practices at particular times for a particular child in a particular context. Why not? Because parenting is like white-water rafting (but much harder)—there is too much unpredictability and changing circumstances.

Dr. Narvaez ends her piece with a plea:

Please make suggestions for other rights babies deserve.

How about these from Declaration of the Rights of the Child?

• The child shall be entitled from his birth to a name and a nationality.
• The child ... shall be entitled to grow and develop in health; to this end, special care and protection shall be provided both to him and to his mother, including adequate pre-natal and post-natal care. The child shall have the right to adequate nutrition, housing, recreation and medical services.
• The child who is physically, mentally or socially handicapped shall be given the special treatment, education and care required by his particular condition.
• The child ... shall, wherever possible, grow up in the care and under the responsibility of his parents, and, in any case, in an atmosphere of affection and of moral and material security; a child of tender years shall not, save in exceptional circumstances, be separated from his mother...
• The child is entitled to receive education, which shall be free and compulsory ...
• The child shall in all circumstances be among the first to receive protection and relief.
• The child shall be protected against all forms of neglect, cruelty and exploitation. He shall not be the subject of traffic, in any form.
• The child shall not be admitted to employment before an appropriate minimum age ...
• The child shall be protected from practices which may foster racial, religious and any other form of discrimination...

Of course, they're from the United Nations General Assembly, and what could they possibly know about human rights?

Dr. Amy's "support with integrity" pledge

Can you imagine the sanctimommies of the world uniting to support all mothers regardless of the choices those mothers make?

No, I can't either.

But here's what such a pledge might look like:

• I PLEDGE to use my energy to help defuse dogmatic battles about what route of delivery, pain relief and interventions a woman chooses for childbirth. I further pledge to refrain from dogmatic battles about feeding method (breast or bottle), transport method (sling or stroller) and sleeping place (family bed or crib). I affirm that my time is best spent directing my positive, encouraging support toward helping mamas successfully parent their newborns.


• I PLEDGE to keep my ego in check, while treating other mothers respectfully, knowing that we're all working toward the common goal of happy, healthy babies. I also welcome respectful disagreement with my own opinions and accept that disruptive disagreement is counter to the goal of helping mothers raise their babies.


• I PLEDGE to agree that there are many right ways to give birth to, feed and raise a baby. A mother should not feel pressure or judgment to perform a specific way. There isn't a "wrong way" as long as the baby is happy and healthy.


• I agree to hold help mothers get what they need to make child rearing work for them, no matter how they choose to do it. If a mother and baby are making it work, I'll stand and cheer them on from the sidelines.

I got the idea for this pledge from another group that has just created a pledge, Support with Integrity, which is supposed to facilitate "judgment-free breastfeeding."

According to the creators for the Support with Integrity pledge:

... there are many right ways to breastfeed a baby. A breastfeeding mother should not feel pressure or judgment to perform a specific way. There isn't a "wrong way" as long as the breast milk is flowin' and the baby is growin'.

The Feminist Breeder is lending her support, after she was chastised by another lactivist for allowing her baby to use a pacifier:

If I – a vocal and stubborn breastfeeder – could feel shamed and ousted by the Lactivist preaching the “right” way of being a breastfeeder, then what about the mothers who aren’t quite as tenacious as me? How does this make them feel? Does shaming, insulting, and humiliating them really help them achieve their breastfeeding goals? Will more babies be breastfed because this Lactivist decided to make a public spectacle about unfollowing me over my pacifier usage? I seriously doubt that a single mother saw that post and thought, “Wow, I hadn’t planned to breastfeed before, but knowing that there’s only ONE “right” way definitely makes me to try it now!”

How ironic then that the same people who proclaim that there is not one right way to breastfeed a baby and it only matters if the baby is eating enough and growing appear to believe that there is only ONE right way to feed a baby, and that is breastfeeding. And many of them have made it clear over the years that there is only ONE best way to give birth to a baby and that is vaginally without pain medication. Some even believe that there is only one place for a baby to sleep, in a family bed, and one way to transport a baby, in a sling.

I wonder if these women see the irony. Having discovered that chastising women about the WAY that they are breastfeeding is not helpful to women or babies, it does not seem to occur to them that chastising women about WHETHER they are breastfeeding is equally unhelpful.

I'm not expecting any breakthroughs on the childbirth front, either. I doubt we'll be seeing these women advocate for patient choice elective C-sections; I doubt we'll see them acknowledging that pain relief in childbirth is both safe and appropriate for those who choose it.

In fact, their pledge is not about supporting mothers; it's about supporting themselves. Evidently it's still okay to criticize everyone else.

I challenge the creators and supporters of the Support with Integrity Pledge to make their pledge look much more like my pledge. Instead of pledging:

to keep my ego in check, while treating other breastfeeding boosters, lactation facilitators, breastfeeding organizations, and mothers respectfully, knowing that we're all working toward the common goal of providing breast milk for babies.

how about pledging this?

"I pledge to keep my ego in check, while treating other mothers respectfully, knowing that we're ALL working toward the common goal of happy, healthy babies."

Why do babies die?

Members of the British Stillbirth and Neonatal Death charity SANDS, including Joshua Titcombe's parents James and Hoa, will visit Parliament today to present a major new report Preventing Babies' Deaths: what needs to be done.

The report is a deeply moving and deeply distressing account of why babies die and what can be done to prevent those deaths.

In 2010, 4,110 babies were stillborn; 1,850 babies died in the first hours or days of their lives, and another 507 babies died between one and four weeks old.

Contrary to common perception, stillbirth is not a rare event: one in every 200 babies is stillborn (a death after 24 weeks gestation).

To my mind, the most disturbing of the many distressing findings is that many of these deaths could have been prevented with appropriate obstetric care. In contrast to the beliefs of many people, these babies are not "meant" to die.

It is a common misconception that all stillbirths are unavoidable tragedies where something is irreversibly wrong with the baby.

In fact over 90% of babies who are stillborn have no congenital abnormality; around a third of stillbirths are unexplained (in other words perfectly formed, normal-sized babies); and a further third are also perfectly formed but growth restricted.

Moreover:

... Around 500 babies die every year because of a trauma or event during birth that was not anticipated or well managed. These deaths, when they occur at term, should never happen and almost always could be avoided with better care.

The report offers a startling fact:

Today it is rare to lose a baby in a high-risk pregnancy. But when it comes to stillbirth the so-called 'low-risk' women who in fact have high-risk babies are being missed.

The report itself is filled with tragic stories of low risk pregnancies where providers insisted that a low risk pregnancy was "normal" in the face of mounting risk factors and actual clinical deterioration of babies.

In the wake of these preventable deaths, providers attempt to hide what actually happened.

Joshua’s avoidable death - the true causes of which would never have come to light without the courageous persistence of his father - not only highlights extreme failures of care, it also emphasises the unwillingness of some Trusts to learn in an open and honest way from those mistakes, thereby risking repeating these failures in the future.

The Titcombes’ case is an extreme example of poor care but it is also just the tip of the iceberg. Most bereaved parents do not have the leverage ... to pursue answers as to whether the quality of the care they received contributed to their baby’s death. The death is generally presented to them as a rare and regrettable, but unavoidable, tragedy. Yet we know that substandard care plays a role in many perinatal deaths.

In a national confidential enquiry into stillbirth in 2000, sub-optimal factors were found to have contributed to the death in three quarters of cases with failures in identifying problems (especially poor growth), in intervening and in communication.
In more recent regional confidential enquiries into the deaths (before or shortly after birth) of 65 normally formed babies, carried out in 2008/9 by the West Midlands Perinatal Institute, it was concluded that 54% could have been avoided
with better care.

The key to preventing these deaths is auditing the deaths and reviewing individual deaths to determine what, if anything, could have been done differently. In a move that is incomprehensible, the Britain has STOPPED counting the deaths, let alone investigating them:

If deaths are not counted, in official terms they as good as disappear. Yet the UK’s national audit programme, the Clinical Outcome Review Programme (CORP) Maternal and Newborn Health, which is tasked with collecting perinatal mortality data, has been suspended since April 2011. In other words the 17 babies who die today will not go into any kind of national audit to help understand why babies die and how to improve care.

Evidence shows that audit can save lives. Without facts on where and why deaths are happening, or any review of maternity units’ performances on perinatal mortality, the potential and impetus to do something about the problem fades. In a
health care system driven by outcomes this situation is unacceptable.

The official panel who reviewed the CORP programme recommended that it recommence by April 2012, but that is not certain. Meanwhile, there is grave concern, and a sense of disbelief, that two or more years of vital perinatal mortality
data have potentially been lost.

In addition, though parents who experienced stillbirth or neonatal death regret that they were not more aware of the possibility, providers view the provision of that information as 'scaremongering."

"You can't make informed decisions if you're not informed," says [a father]. “We asked the Head of Midwifery to review the information they give parents but she said, ‘We don’t want to scaremonger parents’."

Is it scaremongering to tell prospective parents of the risks, however relatively small, of their baby dying before or soon after birth (after all women are expected to assess information about Down’s syndrome and cot death) or is it giving them the power to make truly informed choices about their own health and pregnancy care?

The report concludes with substantive proposals for action and models to guide providers and government officials in making necessary changes.

Preventing Babies' Deaths: what needs to be done is a deeply affecting and deeply distressing review of maternity care in the UK. A press release summarizing the findings is available on the SANDS website. The full report will be available tomorrow; I urge everyone to download and read it. It is impossible not to be moved and angered. Hopefully, Parliament and health officials will take action in response.

Medical care and the limits of autonomy

Talk to a natural childbirth or homebirth advocate for more than a few minutes and you are bound to be treated to a disquisition on autonomy. There is the standard assertion on the right to control your own body,the rejection of paternalism in medicine and the insistence that it is the responsibility of the physicians and nurses to do whatever patients tell them. Invoking autonomy, therefore, is seen as the trump card.

That, however, assumes that there is no limit to autonomy within a medical setting and that assumption is wrong. Consider a classic problem of medical ethics:

What if a patient requests amputation of a healthy leg?

Applying the straightforward claims about autonomy invoked by NCB and homebirth advocates would leave us with only one conclusion: as long as the patient is mentally competent, he or she has the right to expect that a request for healthy limb amputation must be honored. Is that what medical ethics and the principle of autonomy require? Many medical ethicists would argue against that view.

If the right of autonomy does not entitle patients to demand and receive amputation of a healthy limb, there must be some limits. What might those limits be?

To answer the question, it helps to understand what the right to autonomy really means.

In the introduction to Healthcare Decision-Making and the Law; Autonomy, Capacity and the Limits of Liberalism, Mary Donnelly notes:

Since the latter part of the twentieth century, the law's approach to healthcare decision· making has centred on ensuring respect for the principle of individual autonomy. In t his, the law reflects the predominant ethical status which has been accorded to the principle. Thus, John Stuart Mill's famous aphorism that '[o]ver himself, over his own body and mind, the individual is sovereign' might be seen as the defining summation of principle. This principle is given legal effect in Cardozo's often cited dictum that 'every human being of adult years and sound mind has a right to determine what shall be done with his own body.'

Or as Kellie Williamson explains in Healthy Limb Amputation, Bioethics and Patient Autonomy:

...Ultimately, autonomy is about an individual being able to live their own life according to their own idea of what a good life entails. In other words, it involves self-determination and self-rule, and is closely associated with personal identity. In order for each person to be autonomous, other people must respect that person's autonomy. Respect for autonomy can also be extended to the state, institutions and health-care professionals...

However, even a right as fundamental as autonomy has limits. In Autonomy, the Good Life, and Controversial Choices, Julian Savulescu notes:

According to the German philosopher, Immanuel Kant, our autonomy is tied to our rational nature...

There are compelling independent ethical arguments to suggest that the exercise of full autonomy requires some element of rationality ... These arguments are based on the concept of self-determination... not mere choice but an evaluative choice of which of the available courses of actions is better or best. The reason that information is important is to enable an understanding of the true nature of the actions in question and their consequences. But if information is important, so too is a degree of at least theoretical rationality to draw correct inferences from these facts and to fully appreciate the nature of the options on offer.

In other words, an autonomous decision is not merely a wish, but a decision made with appropriate information and rational consideration of the outcomes. Therefore, simply telling your doctor that you want him to amputate your healthy leg is not a sufficient reason for him to honor your request.

How do we determine whether a person is making a rational decision? Savulescu argues that it does not rest on whether the decision in prudent; imprudent decisions can still be honored. The issue is whether the imprudence is rational or irrational, which he defines as follows:

Rational imprudence is imprudence based on a proper and rational appreciation of all the relevant information and reasonable normative deliberation. Some other reason grounds the action beside prudence - this is typically the welfare of others. Thus we should respect decisions to donate organs or participate in risky research, if these are based on a proper appreciation of the facts. However, merely citing a normative reason is not sufficient to make some action, all things considered, rationally defensible . To donate one's healthy kidney to a sick relative would not be rationally defensible if the chances of rejection were very high. There must be a reasonable appreciation of the values in question.

The classic example of rational imprudence is the refusal of a Jehovah's Witness to accept a desperately needed blood transfusion. The decision may be imprudent because it can lead to death, but it is rational because the individual values spiritual well being above health and even life itself.

On the other hand:

Irrational imprudence is imprudence where there are no good overall reasons to engage in the imprudent behavior. The explanation might be that the person is not thinking clearly about information at band or holds mistaken values or wildly inaccurate estimates of risk. We should attempt to reason with and try to dissuade the irrationally imprudent.

Theoretically, then, it is permissible to amputate a healthy limb on request, but only when the person desiring the amputation has a complete appreciation of the results of this choice.

What does this mean for natural childbirth and homebirth advocates?

Autonomy does not mean that medical professionals are required to honor all requests. Medical professionals are not required to honor requests when the patient fails to understand the consequences and therefore is not making a rational choice, or understands the possible consequences but wildly underestimates the risk of those consequences occurring.

Indeed, these are the arguments that patients themselves often make in the wake of bad outcomes that derived from their own choices. Consider the case of attempted vaginal birth after Cesarean that leads to uterine rupture and death of the baby. Patients have argued successfully in courts of law that although they did make a rational decision to attempt labor after a previous C-section (and signed a consent form acknowledging that they had been apprised of the risks), they failed to understand that the baby could really die, or they failed to understand that even when there is only a small risk, catastrophic outcomes will occur.

This is why natural childbirth and homebirth advocacy are so problematic. Most professional natural childbirth and homebirth advocates have a poor understanding of the risks of their choices because they have been misinformed by other NCB and homebirth advocates, and because they lack the most basic understanding of childbirth, obstetrics and statistics, leaving them unable to evaluate their beliefs in any systematic way.

There are limits to the principle of autonomy. You can't expect a doctor to amputate a healthy limb just because you request it. Similarly, if you are an NCB or homebirth advocate, you can't expect obstetricians to violate standards of practice, just because you request it. That is not what the principle of autonomy demands.

Ina May invokes elephant birth

You just can't make this stuff up.

Over on Feministing, Ina May Gaskin suggests that feminists and other women can learn more about bodily autonomy by watching videos of ... elephants and chimps!

Who knew that elephants were feminist? Who knew that elephant birth had anything to do with human birth? Ina May, that's who.

The interviewer breathlessly explains:

I asked Ina May what could our readers do to learn more on the topic of bodily autonomy and birth, and she suggested watching the two videos after the jump, of an elephant and chimpanzee giving birth. Apparently we have a lot to learn from these animals!

In fact, Ina May says:

We’re so affected by prudery and corporate media that you don’t get to see the reality of birth on television unless you go to YouTube. I’d say type in “The Dramatic Struggle for Life.” There, you’ll see an elephant give birth. Her baby doesn’t breathe spontaneously and she has to resuscitate the baby. That’s powerful to watch.

So watching elephant birth shows the reality of human birth? And what exactly does the fact that the elephant baby doesn't breathe spontaneously tell us about women's bodily autonomy? Evidently nothing.

Of course, chimps are among our closest primate relatives so they must surely be able to teach us about bodily autonomy:

The second I’d recommend is “Chimp Birth Attica Zoo” and there you see a chimpanzee give birth and labors in a position that nobody would ever guess that anyone would take [upside down]. But, you watch her expertly give birth without any damage to herself with definite calm and perhaps pleasure.

Or perhaps agonizing pain. But I guess Ina May fancies herself a lay expert of chimp sexual satisfaction as well as midwifery. And what does this have to do with women's bodily autonomy? Once again, absolutely nothing.

You realize when you see these that neither of these mammals are afraid. They’re comfortable with their body and what people will begin to ask is, “What could we learn from this?”

Did Ina May interview the elephant and the chimp? Oh, I get it, she intuited that those animals were not afraid. And she was able to intuit their feelings just by watching the videos.

Birth has been commodified so escaping it is like finding your own wild nature. If you choose to go to a hospital, which I’m not putting down, then I suggest be wild when you’re there and you’ll teach ‘em something!

Teach 'em what? That you listen to the ravings of wacky self-appointed birth experts? What does being wild with uncontrollable pain have to do with women's bodily autonomy? Nothing, of course. And why isn't employing technology (an epidural) so you won't have to be wild with pain an expression of women's bodily autonomy? Because Ina May says so.

Honestly, I can't imagine why anyone (let alone feminists) takes this woman seriously. She lives in a cult, has no training in midwifery, let one of her own children die without seeking medical attention, and can't tell the difference between an elephant and a human being. Will some one please explain to me how anyone with a modicum of intelligence could believe anything she says?