To The American Congress of Obstetricians and Gynecologists (ACOG):
As it relates to stillbirth and infant death, it’s time to wake up. Or, in other words, it’s time to get it together. Because it’s 2016 – the supposed age of information and communication and technology and the internet and fact checking and developments and breakthroughs and progressive ideas. And, in 2016, in the United States of America, there should be few, if any, excuses.
But, instead, the excuses run oh-so-sickeningly rampant. So any real progress remains stunted. Or non-existent, really – left to efforts of educated, aggressive patients, grass roots movements and small non-profit organizations, technology companies, and special lone-wolf-type medical professionals who possess the curiosity and energy necessary to attempt to initiate change. Because, certainly, you’ve made few such efforts.
Since losing my first born child in July of 2015, I continue to be blown away (in the worst way possible) every time I find myself involved in a conversation related to the medical side of stillbirth. I can’t believe the things I hear over and over and over again.
And said unbelievable things generally don’t come from fellow bereaved parents. They come from you – via your affiliated medical professionals, who do an exemplary job delivering your message, always crediting it to you.
I know because any time I challenge one of your affiliated medical professionals, he/she quickly throws up the white flag, often acknowledges I’m indeed correct, but then explains, “Stillbirth prevention isn’t a priority because of ACOG. Standard of care isn’t so great because of ACOG. Etc.”
So many things are “because of ACOG” that I’m confident my anger isn’t misdirected.
And I often feel like I’m stuck in the ‘60s when I’m confronted with you and your affiliated medical professionals’ attitude towards stillbirth. Because this information is generally so out-of-date, many times grossly inaccurate, and frequently debunked by a simple google search.
So then I wonder if you just think we’re all stupid. Or I wonder if you and your affiliated medical professionals are incompetent. But then I remind myself this probably isn’t the case either. Most likely, many of you are highly intelligent and competent, rather primarily concerned with minimizing legal liability, which I acknowledge, in our country, with our broken healthcare system, must be a challenge. (Believe me, I don’t envy you for having to weigh these considerations.)
Though none of these complexities change the fact that I’m still frequently left completely baffled upon hearing the things your affiliated medical professionals say – things so ridiculous they should never be spoken again. Things you should never want spoken again. Because they’re false. And they’re misleading. And to those who know better, they make you and your affiliated medical professionals look embarrassingly inept.
So, while I acknowledge this is a broad topic with a million and one complexities, I implore you, at the very least, to consider banning the below phrases from further use among your affiliated medical professionals, many of whom, I acknowledge, probably spew said phrases out of desperation, because you so often tie their hands as it relates to them actually being able to implement tangible changes within their practices (a topic for another day). But the below phrases should be banned regardless…
“This (stillbirth) just happens sometimes.”
Stillbirth doesn’t “just happen sometimes.” Maybe 50 years ago it did. But not anymore. At least not in all 26,000 instances per year.
There is a medical reason for most of these deaths. A reason you and your affiliated medical professionals should be curious about. A reason likely identifiable upon a full post-mortem investigation. A reason that, in thousands of cases, could’ve been identified before death occurred, allowing for potential management to a better outcome.
Patients with other ailments aren’t simply told, “This just happens sometimes.” And it should be no different with stillbirth, one of life’s most tragic events. At least not before you try harder. “This just happens sometimes” is never an acceptable first response, rather it should be the last response.
“This (stillbirth) is like being struck by lightning.”
You know what’s wrong with this analogy? It’s so inaccurate and misleading it borders on unethical. Because who’s actually scared of being struck by lightning? Answer – no one. Because it’s extremely rare – a 1/12,000 chance.
1/160 pregnancies end in stillbirth. Therefore, the lightning strike analogy simply doesn’t accurately convey the true likelihood of this possible outcome to those discerning patients who want to know – who base their level of worry, and possibly their course of preventative action, on a trusted professional’s word.
Find a new analogy. Now.
“But I don’t want to scare my patients.”
Patients need to be scared. Or, perhaps more realistically, and at minimum, a patient’s level of fear, or opportunity to experience fear, should be commensurate with the probability of the outcome in question.
For example, it doesn’t make sense that, currently, patients are scared of chromosomal abnormalities (before advanced maternal age), death from prematurity, SIDS, fatal injury by car accident, childhood cancer, etc., yet they’re not scared of stillbirth, even though stillbirth is statistically far more common than any of these other things.
And sometimes fear and stress, in healthy levels, inspires positive action. Like a patient who’s aware of the risk of stillbirth might monitor her baby’s movements more closely. (Though this by no means guarantees a positive outcome, I’m quite confident there are countless bereaved parents who would’ve welcomed the opportunity to find out.)
And, in what other area of medicine is this statement acceptable? Medical professionals educate on safe sleep practices. Hospital classes devote hours to car seat safety instruction. Women get mammograms to screen for breast cancer. All in attempt to avoid “scary” outcomes. Medical professionals talk about these things.
Stillbirth needs to be talked about too.
“We can’t see umbilical cords on ultrasound.”
Wrong. Google “umbilical cords on ultrasound,” and see what you find. Hint, hint – here’s what…
So is this a purposeful lie? Because if you admit umbilical cords can be seen on ultrasound, you might actually have to do something to attempt to prevent umbilical cord related deaths? Or are you really just so behind the times that you don’t know how to use google or your ultrasound equipment? Or have you not invested in the latest and greatest technology like GE’s apparently selling?
Whether this statement’s out of ignorance or meant to try to avoid legal liability, it needs to stop. Because it’s so obviously false to those well versed in the internet – it’s only a matter of time before patients start calling your bluff with more frequency.
And by the way, there are three key structures involved in a pregnancy – the baby, the placenta, and the umbilical cord. It’s time to start looking more closely at each of them (not just the baby). But, currently, it appears you pay little attention to the placenta and umbilical cord, and it seems as though this is to avoid legal liability too.
But in this information age, patient knowledge will catch up. And you’ll eventually be forced to pay attention, acknowledging the importance of evaluating the health of the placenta and umbilical cord within the framework of a patient’s prenatal care.
“Even if we notice umbilical cord issues, we usually don’t tell patients.”
Oh, really? Because this seems unethical. Like if you notice a patient has a deadly blood disease, do you generally tell him/her? Oh, you do? Thought so.
And I thought you couldn’t see umbilical cords on ultrasound. But now I guess you’re admitting you can. So which is it?
Patients have a right to information regarding issues they’re facing, not only so they may better understand them, but also so they may be more participative in their care as well as in important, potentially life-altering decisions, if they so desire.
“But even if we identified umbilical cord issues, what would we do about it?”
Inform the patient of the issue and the related risks. Monitor the heck out of it. Inform the patient of the increased importance of familiarizing herself with her baby’s movements. Consider early delivery. Consider C-section delivery if specific cord pathology suggests baby is at heightened risk for dying during natural labor. Give the patient options so she can actively participate in making informed decisions regarding her body and her baby, if she so chooses.
Look to the ways in which you currently monitor monoamniotic twin pregnancies, of which the greatest risk is cord entanglement.
Or simply try harder than you do now (which often seems isn’t at all).
“But so many healthy babies are born with umbilical cords wrapped around their necks.”
And 26,000 babies are stillborn each year. Approximately 8,000 of these deaths are cord-related. And do you know the difference between an innocent neck wrap and a more ominous one? Some neck wraps are more high risk for turning into deadly knots. Maybe it’s time you considered such things.
“We don’t suggest kick counts, because we’re not even sure if they matter.”
Well, maybe someone should try to determine whether they matter. Or maybe you should suggest them as part of standard practice. Just in case. Because, again, patients should know about the risk of stillbirth. And, if kick counts might matter, isn’t it better to just go ahead and perform them, erring on the side of caution?
“Make sure you count 10 kicks in a day, 10 kicks in an hour, or 10 kicks after a meal, etc.”
Ten isn’t enough. It’s best to get to know a baby’s movement patterns. If you’re going to provide instruction in this area, at least do it consistently and properly.
“Babies slow down towards the end of pregnancy. They sleep a lot.”
This isn’t true. No one, especially your affiliated medical professionals, should be perpetuating this myth. And they are. And it defies common sense. Because a full-term baby in the womb is the same baby as it is outside the womb post-delivery – a living, moving baby, who responds to stimuli and who can be awakened fairly easily. If a patient can’t get her baby to move, it’s cause for concern. And alarm. Not in three hours. Now.
“Don’t request an autopsy – most the time they won’t find anything anyway.”
While patients are certainly entitled to decline an autopsy, it should never be because one of your affiliated medical professionals is telling her “they won’t find anything anyway.” You should support full investigations into deaths of seemingly healthy babies. You should want to learn more. So you can gather the data necessary to do better.
Again, this only begins to scratch the surface with the stillbirth topic. Thus I’m confident this is only the first in a series of open notes to you.
And I’m fairly certain this isn’t a communication issue. Rather this an apathy issue and a fear of legal liability issue. You, ACOG, are a very effective communicator and disseminator of information – all your affiliated medical professionals know of your 39-week induction rule, which has been in effect for a mere few years (also a topic for another post).
All your affiliated medical professionals know the institutions with which they’re employed can win awards, some of them financial in nature, for having the highest percentage of post-39-week deliveries. (Which, on a side note, shouldn’t institutions be rewarded for the lowest percentages of deaths and life-altering medical conditions as opposed to highest percentage of post-39-week deliveries, an arbitrary benchmark that may not even appropriately apply to all patients?)
So it’s time to wake up. And get it together.
And a good start would be mandating all your affiliated medical professionals cease using these above asinine phrases – phrases that call into question your (and their) competence and insult the intelligence of all of us patients.
At the very least please give us answers that aren’t so easily disproved by google searches.
Get. It. Together.
UPDATE – I’ve emailed this note to ACOG. I’ll keep everyone posted on the response. (I hope I get a response!)