Taro listens to the baby's heartbeat at one of our last pre-natal visits with my midwife, before the home birth of J, in 2007. Photo by Liz Rubincam.
Fact: Taro and I chose not to have any sonograms during either of my pregnancies. I had many reasons to avoid this procedure, not least among them that the American College of Obstetricians and Gynecologists, the American Academy of Family Physicians and other medical organizations advise against the routine use of ultrasound in pregnancy.
Today I ran across an excellent piece on the subject, via my Facebook friend, Emma Kwasnica. Ultrasound and Fury: One Woman's Ordeal is a must-read. It touches on the many complicated medical, philosophical, ethical, and cultural issues surrounding this increasingly popular proceedure. An excerpt:
"women should be entitled to have ultrasound and other prenatal tests, but...the process of informed consent must be taken far more seriously than it currently is. Women should be told in detail of the limitations of screening, and of the fact that clinical studies show no benefit to scanning during a normal pregnancy"
Read it. And tell me, what are your thoughts?
wow, I can't believe that was written in 1996! Some things never change! I just had an appointment w/ a genetic counselor (just for a specific test that was totally unrelated) who acted like we wanted to hurt our baby by forgoing our 20 week anatomy scan. It's amazing how many medical "professionals" are not practicing evidence based medicine. (oh, and obviously this was not at St. Vincents...it really was a night and day difference between the care there and at other NYC hospitals)
ReplyDeleteAs both a physician and a mother, I'm all for forgoing unnecessary testing. However, we had what would probably be deemed an unnecessary U/S primarily because I'm total worrier. They unexpectedly found a serious heart defect that will require surgery within the 1st 2 weeks of our daughter's life. If I had declined the U/S we would have never known until some time after birth, potentially decreasing the chances for the best outcome. Knowing early allows us to come to terms with this diagnosis & also to meet with & coordinate all the specialists that will help our daughter. I know that for many, declining the scan is an option that the family is comfortable with, and that for some who choose the scan, false positive results that will cause unnecessary follow-up tests & anxiety.
ReplyDeleteAll that to say that I think it's a decision that should be made on an individual basis - that what's right for one is not what's right for all. For us, though, what seemed like an unneeded test at the time turned out to be the right thing to do.
A friend had a very troubled pregnancy because of ultrasound. Her baby was diagnosed with Down syndrome and the error was only detected in late pregnancy. Bruna, her daughter, was born completely healthy.
ReplyDeleteThis topic is close to my heart. I'm a health professional, a health services researcher and a mom. When I got pregnant I looked through the medical literature to decide if we should get a 20wk ultrasound. I wrote about it briefly here: http://www.accidentalpharmacist.com/search/label/ultrasound
ReplyDeleteWhen we ended up getting an ultrasound in my 35th week to confirm a breech position (i.e., the ultrasound was indicated rather than optional), the ultrasound technician was angry that we missed the 20wk ultrasound. She told us that we had made her job much more difficult and she was going to have to screen a much larger baby (even though we intentionally declined screening). While she screened, she talked at us rather than with us - and eventually refused to talk to us at all. During the ultrasound, our baby's heart rate dropped several times because it turned out that she was compressing her cord (we think), leading to an emergency c-section. While the outcome of the second US had nothing to do with the first, it gave the technician the courage to call our midwife and accuse her of offering suboptimal care. It was a mess and the experience was shocking.
So, while an ultrasound is a woman's choice, it doesn't always feel like it. As with any medical test, we should ask the following questions: 1) What is the test looking for (and capable of looking for)? 2) Will knowing there's something wrong change the outcome? 4) What will I do if the test finds what it is looking for? 5) How common are false positives or false negatives with the test?
If the test found something but you would do nothing, perhaps the test is not worthwhile. As Kim pointed out - knowing didn't change the outcome as her daughter would have needed surgery anyways, but knowing ahead of time let them prepare - something parents often say about Down's Syndrome screening. There's a similar debate over early cancer screening - if you're going to die in 10 years and you can't do anything about it, should you find out now or find out when you actually get sick. The assumption is that 'knowing' means 'saving' but there's often no evidence of that.
And different people have different answers - it's very personal. Some people just want to know. And sometimes they wanted to know until they actually knew, and then they wish they could take it back.
So, my questions are still this: Why is ultrasound screening not presented as a personal decision of the parents? And, why is ultrasound considered a catch-all for the dangers of the womb when it the evidence shows it is not capable of that?
I didn't like that article. I think she was whining in my opinion. Even though the results proved to be wrong, there is no need to rant on about her "horrible" experience. So she didn't have the "perfect" pregnancy experience....just thinking about pink dresses, wallpaper and baby showers. What if it was right? She would have been so grateful to have prepared herself to help her daughter with the clubfoot. These ultrasounds are only there to help and this article is a bit of a slap in the face for those who have actually found abnormalities. It annoys me when people complain like this when there are women who would do anything to make sure their baby is healthy. Bottom line, procreating is serious and should be approached with a realistic attitude. Nothing in life is perfect!
ReplyDeleteThank you for posting on this topic. My husband and I are TTC after a miscarriage in March. The way the miscarriage unfolded was closely tied to ultrasound.
ReplyDeleteWhen I found out I was pregnant (at 4 weeks) I had already started spotting. When the spotting didn't stop by week 5, the OB's office had me come in for an ultrasound. The ultrasound technician and the nurse said that everything looked normal, though they couldn't explain the bleeding. They SAID if it was a miscarriage, they would have been able to tell. Yet, they wanted me to come back in a week to repeat the procedure.
A week later I went back with my husband (he was away on business the first time) and we were fully expecting to hear once and for all that everything was fine and even to hear a heartbeat (we were at 6 weeks by that point). The first thing that the sonogram technician said to us was, "So, have you actually had the miscarriage yet? Or...?"
I was like WTF. We were told everything was fine and that we were just coming in to make sure of that. She was like, oh. Right. Anyways, the ultrasound showed no development and we were told we were having a miscarriage, which was devastating.
Anyways, this time around as we are trying to conceive, I am already thinking about how I want my pregnancy and birth to go. My goal is now to have a natural birth at home if we can afford it. But in thinking about prenatal care, I am instinctively distancing myself from the idea of sonograms. I didn't have the information on why they are not useful and potentially harmful (I am a natural worrier so I know that they would not be helpful for me) but I just know that I don't want to do them if we don't have to.
Thank you for sharing this. With my 3rd pregnancy my husband and I decided to not find out the sex and to also not have the sonogram. There seems to be very little info/studies out there on the subject.
ReplyDeleteThe only fall back to not getting one was not having that "peace of mind" I felt like I got with my 1st two pregnancies, I tried to remain positive but also had many moments where I felt I may have made the wrong decision, the big "What if..."
but I do not regret not having one. I got so much negative feedback from friends and family for not having one . But we are used to that as most of our lifestyle choices are not very...mainstream.
Hi Leigh,
ReplyDeleteIt's so funny how the world works, isn't it? It seems like, when you personally experience something, suddenly you are bombarded by so many other things that are related. Even with things so simple as buying a car or getting pregnant. You start seeing that same car everywhere, even though you are sure you rarely saw it ever before, and when you're pregnant, pregnant women are EVERYWHERE (Yeah... Like they simply weren't around before!).
So it is today with this whole ultrasound issue. I just went in this morning for one as I was nursing my daughter during the time of conception, had a varied cycle, and we were trying to figure out how far along exactly I was in the pregnancy. Turns out I was right on target with my "guess", but anyway, being that I've had all of my babies on their due dates, I was really wanting to have a better handle on the actual (more like most likely, as with anything in relation to an ultrasound) due date.
What I have learned during these experiences is simply to take the information you receive from the doctors with a grain of salt. Sometimes more than one grain. I go into these things with a very positive outlook. To me, no matter what problem may possibly be presenting itself, well, it doesn't bother me and I'm not going to change the fact that I will do my very best to carry this child to full term. I have no intention of aborting my baby for any reason.
(...continued in next comment)
(continued from above)
ReplyDeleteA part of this is because of my belief that the chance that a life can be had and love can be shared far outweighs any possible difficulties. I know many families who have children with Down syndrome who love those children as they love each of their other children, and those children live wonderful, happy, love filled lives. Not to mention the benefits and character strengths that those families exude because of those children! I've had friends who've been told that their children would be born with spina bifida or kidney or heart problems, only to see those children born completely healthy and without even a sign of those supposed problems. My mother, when she found out that she was carrying conjoined/siamese twins, was told that she NEEDED to have an abortion because her daughters would most likely be vegetables and life would be terribly difficult, and most likely both of them would die. My sisters, who were the very first successfully separated conjoined twins (which I am so thankful is true!), just turned 23 years old last month and are both graduating from college this month - one with a degree in the arts, the other at the very top of her class as a bio major.
Every pregnancy is different. And, every ultrasound I've ever had has been different. I actually enjoy them, though I have wrestled with whether or not it is really "right" to see the baby before he or she arrives. I would argue that hearing the heartbeat is also a medical miracle in that regard. Without a stethoscope having been invented, it would have been very hard, or impossible to hear such a lovely thing as a baby's beautiful heartbeat.
But I do not rely on ultrasounds for on target info at all times. I think that whenever I am told that "this or that" may be an issue, spending the time to learn about those issues is not time wasted. I think that article was a great example of that, actually, even though the author puts it in more of a negative light. You can see that she was actually introduced to a whole other part of the world we live in. Now, according to her, she narrowly escaped such horrors, but honestly, I hope that it brought about for her a greater understanding of the problems some families face, and perhaps she can be an encouragement or of help to someone else who will truly have to deal with such a thing for their child.
As new/expecting parents, we prepare for all sorts of things. We prep baby clothes, we research the best car seats and slings, we eat this and that or avoid this or that - most of the time, just in case!
Regarding unnecessary worry... I think maybe I'm just totally not the understanding sort when it comes to worry. My faith in God has not "raised me" to be a worrier. I believe that whatever trials come my way, God is using them for his glory and for my (and all sorts of other people's) benefit. Many of your readers, and maybe you, may not agree with that on any level, but as I said, they are my beliefs and I am entitled to them as everyone else is entitled to theirs.
(again... continued... so sorry!)
Today I was told that my "baby's brain ventricles were presenting with a cyst beside each one, which could - or could not - mean something serious. Every other body part that might give more of a hint as to what might be going on were absolutely beautiful and whatnot, so it was probably nothing to worry about, but that blood test I had turned down... Yeah. I should definitely get that taken before my 20th week expires five days from now..." Now, that was just paraphrasing, but, anyway. When I informed the doctor that I had no intention of taking the test, she looked back at me in shock. I explained that no one in my family had any history of that condition, that her showing me that the baby presented no other signs of the condition was pretty great news, that the baby was very mobile and had great blood flow and heartbeat was fabulous to me... the fact that I'd had three other pregnancies start and finish completely normally, that I'm healthy and live a healthy lifestyle, and so on, really steered me more toward leaning toward the positive and not getting myself all worked up over what was "probably nothing at all".
ReplyDeleteHer answer to me was a very scrunch faced, "Well, it's your decision, ultimately, I suppose." And she's right. And I've made it.
Anyway. Those are just my two cents. I'm very grateful for the tip to the article, though. I hope that it doesn't necessarily steer people away from getting ultrasounds if they are needed, but that it will encourage expecting parents (whether they are having an ultrasound or blood or fluid screening) to not allow themselves to fly into a fit of worry over what may or may not be an issue. Study up on the issue - does it ever hurt to learn something new? - but remain hopeful and positive for your baby. Would a deformity or other condition really cause you to love your baby less? The likely answer is that it absolutely wouldn't. And for those whom it would, I don't quite know how to respond to your reaction.
Hugs. I love that picture! You look beautiful! I can hardly wait to have a big beautiful belly like that again!!! (Four months to go over here!)
Wow, thank you everyone for leaving such lengthy and thoughtful comments on this topic. I love this dialogue...
ReplyDeletePaul and I just had a discussion about ultrasounds this morning. Its still early in my pregnancy so we have time to figure it all out. I had so many ultrasounds with Logan and I don't want to do that again. Thanks for posting this link Leigh!
ReplyDeleteWow. Wow. Bravo to the woman who wrote it. This is something every family or family-to-be should know about. I honestly had never heard any compelling argument against ultrasounds other than that they can mis-determine the gender. I don't think that ultrasounds should be done away with completely. And I still think women ought to be able to have one if they want one. But it's so true: we need to know its limitations and flaws before going into it. Seems like a no-duh thing to me.
ReplyDeleteSorry for the second comment, but I wanted to add something else. I do remember wondering back when we were pregnant and going in for an ultrasound about what would happen if you receive really bad news. Because the waiting room is filled with people who just went in for an ultrasound and are awaiting their DVD; they're on their cell phones, giddy as all get-out, announcing their baby's gender to the grandparents to-be, etc. How awful for anyone coming out of that room with bad news. The idea of this scenario really disturbed me when we went in.
ReplyDeleteOh my gosh, I just noticed the date on that. Wow again. What's the latest on this?
ReplyDeleteRe: Accidental Pharmacist's comment: there actually is some evidence showing that if you carry the brca1 or brca2 gene, that mastectomies can reduce your chances of getting cancer. (Listen to Dr. Susan Love interview) http://66.226.4.226/programs/patt-morrison/2010/03/18/can-removing-a-breast-prevent-breast-cancer/
ReplyDeleteIn other words, I think some women are finding out in case more studies/information comes out that could help them. So I don't really know if these issues are comparable.
I am still trying to get over my experience with my 1st son- we had 8 ultrasounds because at the 20 week they couldn't get a good look at his kidneys and WORRIED me unnecessarily almost sick! Saying he could have only 1 or no kidneys. We had ultrasound after ultrasound until he was born and he was perfectly FINE.
ReplyDeleteHowever, a couple years later we found out he has epilepsy and who KNOWS what role all thos stupid worrisome ultrasounds played in that. And don't get me started on the 3D for fun u/s. I wrote about that a while ago and grrr. People need to be educated about this stuff (and everything they are "assuming" is doctor protocol.)
Steph
Rach, I found this link with a list of studies (the most recent dated 2006) that look at the effects of ultrasound on neurological development.
ReplyDeletehttp://www.unhinderedliving.com/pultra.html
Also, NO studies exist that prove the safety of this procedure. Remember, even the American Medical Association recommends AGAINST unnecessary exposure.
"Unnecessary Exposure" includes the use of ultrasound to:
1. Confirm the sex of the baby.
2. Assess gestational age (how many weeks old the baby is).
3. Assess fetal size and growth.
4. Confirm multiple pregnancy.
5. Determine fetal presentation (the position of the baby in the womb).
Ina May Gaskin writes briefly but convincingly in "Ina May's Guide to Childbirth" about this topic as well.
ReplyDeleteAnd here is the web site of the American Society of Radiologic Technologists, which itself warns against unnecessary use of ultrasounds, citing the 2006 study: https://www.asrt.org:/content/News/IndustryNewsBriefs/Sono/studyshows062408.aspx
Interesting article, EXCELLENT feedback! It can be helpful and unhelpful at the same time. It's a great reminder that any and all prenatal care (I use the term loosely) is a choice. Of course, US is not perfect (what is?), nor is it even necessary. Plenty of babies have been born without.
ReplyDeleteI've been fortunate that my prenatal medical provider has reitereated over and over again that these tests and scans are a choice, and what exactly I could be getting from them.
I openly wonder how much insurance and medical liability come into play with the widespread use of the 20 week anatomy scan, and the routine 36 week position check for doctors. I have a feeling that there is something more behind the medical profession's treatment of US.
I love your thoughts, Leigh. Thanks for sharing this today.
i have quite a bit of resistance to radiation in general, with no real evidence, just in my gut.
ReplyDeletehowever, i am learning more and more the importance of balance and how destructive extremes can be.
in the case of this article and like so many others who have been misinformed--i'd rather them catch something early on so i can have time to prepare for it--if that means a misdiagnosis, then that means a misdiagnosis. thank god. i believe the benefits outweigh the risk here.
having come from a completely holistic, organic homebirthing approach on my first child and then after losing that child during my homebirth, i opted to another extreme with my second child. a planned c section and ultrasound technology as my assurance throughout my pregnancy.
the tricky thing is, that once you make a decision towards one camp, there is plenty of information--be it true or false--to support your decision --on the internet, in books, etc. as mothers, its important to avoid avoidable risks and measure things in benefits vs risks since there is no promise of an absolute. if it's a way to somehow protect my child, then i opt for u/s....even in my "extreme" case with my 2nd child, i was never exposed to it every visit or whenever i wanted to. it was still few and far between.
also, do you have links to "the American College of Obstetricians and Gynecologists, the American Academy of Family Physicians and other medical organizations advise against the routine use of ultrasound in pregnancy."??
ReplyDeletejust curious! thanks!
Cara,
ReplyDeleteThank you for your comments and question. I do not have url links for those original statements, however here is the source of the American College of Obstetricians and Gynecologists' advising against the routine use of ultrasound in low-risk pregnancy: "Routine Ultrasound in Low-Risk Pregnancy, ACOG Practice Patterns: Evidence-Based Guidelines for Clinical Issues," Obstetrics and Gynecology 5 (August 1997).
Here is a similar statement from the National Institutes of Health: "Diagnostic Ultrasound Imaging in Pregnancy," Consensus Development Conference Statement 5, no. 1 (1984, Washington, DC).
The World Health Organization (WHO) has also urged prudence: "Ultrasound screening during pregnancy is now in widespread use without sufficient evaluation. Research has demonstrated its efficacy for certain complications of pregnancy but the published material does not justify the routine use of ultrasound in pregnant women." -- World Health Organization, "Diagnostic Ultrasound in Pregnancy, WHO View on Routine Screening," Lancet 2 (1984): 361.
I will try to follow up with links/citations for the American Academy of Family Physicians statement.
Thanks!
thanks much leigh! i ended up talking about this to my ob friend, wondering if my concerns were valid. he made an excellent few points i hadn't considered. one being that just as much as we lack evidence that u/s is safe, we lack evidence that it's unsafe too. and secondly (and more importantly) it is NOT radiation, like i thought. it's soundwaves. and the only harm that ultra sound is proven to cause is in oceans (specifically with dolphins & whales) I imagine at high megahertz, it could be problematic to one's hearing if too high but the ultrasound is at a 7 megahertz at it's highest (the loudest cell phone ranges to about 1900 megahertz) The sound frequency measures the distance from the "probe" to your fetus, scanning an image on a screen by sound. i thought this was pretty cool to learn and gave me some assuredness in having used u/s technology during my pregnancy. just an fyi! hope you find it just as helpful.
ReplyDelete@ Susan - I'm not sure where you got your information, but your sisters where not the first pair of conjoined twins to be successfully separated, not if there are in their 20s. Sherrie and Sharise Jones were separated in 1967, and there were several other successful separations following theirs.
ReplyDeleteThanks for bringing attention to this important (and oft neglected) topic. I had 2 sonograms for each of my pregnancies - one at about 8 weeks and one at 20 weeks.
ReplyDeleteWhen we eventually conceive #3, I think we may opt out altogether.
stephanie@metropolitanmama.net
With my first pregnancy (in 2002-03, when I was 32/33 yrs old), we opted to have only the 20 week ultrasound. We were working with midwives, so we had informed consent for each step and process. We chose to do the 20 week ultrasound (after I researched and tried to get clear about our reasons), but in retrospect I see that our choice was really based in fear, though my husband and I thought of it as "making sure everything is all right."
ReplyDeleteWe were referred to the ultrasound doctor, and I told the doctor that I didn't want to receive any verbal information during the exam, and that at the end, I wanted to hear either "everything's fine" or "there is some issue that is serious enough to need follow-up and here is what it is."
The doctor agreed but he was definitely surprised, and a bit confused. He said that in all the years he has done ultrasounds, no one has made that request. He kept marveling over my request, which began to awaken my own feelings of self-consciousness. I think it just never occurred to him (or to anyone else) that patients could ask for the information on their own terms, or that individuals have different preferences.
During my second pregnancy (in 2006, at 36 yrs), we opted out of pretty much everything. :) I wanted to have a minimally invasive birth, and we had a very supportive and truly hands-off midwife who practiced informed consent all the way. We chose to do one test the whole pregnancy, and that was Group B Strep (I tested positive before). I had more information this time around and wanted to make an informed decision on taking the antibiotics if I tested positive (e.g., if certain other conditions presented themselves, such as broken waters for 24+ hours, etc.). BTW, the test was negative.
[I had also had gestational diabetes with my first, so I knew what it felt like/what the symptoms were, and sure enough, at about 24 weeks, my blood sugar completely changed, and I began testing my blood and eating on the gestational diabetes diet as I had before. I guess I'm trying to say that perhaps if I hadn't had it with my first pregnancy, I might have opted to have the test during my second.]
Anyway, sorry to stray from the topic of sonograms, but I think all tests bring up the same issues around informed consent. The same basic questions you ask around one test apply to them all, and I think it would be wonderful if professionals facilitated rather than hindered that inquiry process. It takes thought (actually I would say "presence"), time, and attention to come to clarity -- it can be difficult to do, even in private, and to be required to make decisions without the personal space needed is, in my opinion, a travesty.
I am, of course, not talking about immediately life-threatening situations which require a moment's decision. Though even those decisions will require a healing process afterward to come to terms with what happened.
One more thing, and then I'll stop -- I was a huge fan of Natalie Angier (back in the 90s! :) and I was so surprised to see her as the author of the article, then I realized the date. Wow! Could have been written today.