I had a very interesting conversation with the ultrasound tech during yesterday's scan to rule out DVT. She asked, probably to make small talk, if I had already had my pregnancy ultrasound. I said, "I'm not having an ultrasound unless there's a specific indication." We moved on to other topics, such as whether or not I work. (I'm never entirely sure how to answer this; I usually end up saying "I just finished my PhD.") I told her that I was in American Studies and that I focused on childbirth and maternity care.
After the exam was done, she turned to me and asked why I wasn't having an ultrasound. I briefly explained that, based on the medical evidence, I had decided not to have a routine ultrasound. I mentioned several RCTs comparing routine versus medically indicated prenatal ultrasounds; they concluded that routine ultrasounds for low-risk pregnancies brought no significant improvements in neonatal outcomes. (For example, one meta-analysis of several RCTs concluded that "There is no evidence from RCTs of routine ultrasonography that it has any effect on the outcome of live births from low-risk pregnancies. Until there is further information from RCTs about possible subtle effects of ultrasonic scanning, exposure of fetuses to ultrasound scans should be minimised by performing them only where the clinical benefits are established. More research is needed to follow-up children of mothers taking part in RCTs.")
She replied, "Well, you can look at RCTs all you want, but they don't really matter when you've seen what I've seen." She mentioned lots of rare and potentially fatal conditions that ultrasound scans can detect in women with totally healthy pregnancies. One of them was anencephaly--which is 100% fatal, so I am not sure how that would be reason to have an ultrasound. She said, "In this day and age I cannot imagine anyone not choosing to have an ultrasound." She also told me, "I cannot understand how someone as educated as you are would choose not to have an ultrasound."
She kept repeating these things to me; I could tell she was having a really hard time wrapping her mind around the fact that some women would choose not to use this technology. Her comment dismissing the research evidence about routine ultrasounds was particularly fascinating. In her case, no amount of evidence-based medicine would change her views; she had simply had too many first-hand anecdotal experiences to be able to accept the conclusions of the medical research.
I think that personal experience plays a tremendously influential role in those who work with pregnant and birthing women. It's partly our human tendency to remember the (numerically small) scary, unusual, and exceptional situations rather than the more common "normal" pregnancies and births. For example, you can cite literature about the safety of VBAC all you want, but some OBs will still insist that they are too dangerous and too risky, perhaps because they have witnessed first-hand the rare case of uterine rupture. It's fine to have personal opinions and even certain preferences based your first-hand experiences. However, it is highly problematic when a care giver allows their personal biases to overwhelm or even erase the medical evidence or to dictate what a pregnant woman can or cannot do. I would hope that every health care provider would be able to separate their personal experience and emotional preferences from both the medical evidence and the woman's autonomy in decision-making.
I had a similar situation when I had my ultrasound. When the tech found out that I was having my baby at home, he pretty much flipped out. He started talking about how my baby was breech (I was 18 weeks along) and how the placenta looked too close to the cervix and by the way, had I even asked my midwife what she did in case of complications? I just felt like replying, "no, we're complete idiots and we're just doing it because Ricki Lake told us to." DH saw that I was about to go off and he gently yet firmly squeezed my hand. We made it out of there, but only barely.
ReplyDeleteHow funny! I was just having an argument with someone over a new study that says that marijuana is not a gateway drug. I told him that in my experience (I hung with a very bad crowd in high school), that is simply not true. He laughed and said that anecdotal evidence should never be the basis of anyone's opinions, but I know I will never be able to separate first hand experience on that particular issue. I can see where health care providers can really be put in a conundrum when their real life experience seems so much more valid than a study. You given us some interesting things to think about.
ReplyDeleteThe meta analysis you cite is from 1994 (using studies dating back to 1980!!). Ultrasonography has changed immensely over the past 30 years. I'm not a bit surprised that routine fetal ultrasounds failed to improve perinatal mortality rates in low risk pregnancies in the '80s; ultrasonography was still quite remedial then. However the technology has come a long way, and it's inappropriate to assume these results hold today.
ReplyDeleteIt's true that that particular one is older--it just happened to be the first reference that I found and I didn't have a lot of time to look through my folders. Anyway my perspective remains unchanged that for me, routine ultrasound doesn't have enough clear benefits to outweigh some of the possible negative aspects (anything from the unknown long-term effects of ultrasound on the fetus to the nocebo effect of false positives/negatives, etc) or to justify doing it "just because it's there." Do I think that ultrasound is putting women and babies in clear and imminent danger? No, certainly not to the extent that prenatal x-rays did. But still I think there enough unanswered questions and risks and well as benefits that it's entirely reasonable to decline a routine ultrasound.
ReplyDeleteThat woman would have loved me...somehow I've had four pregnancies and not a single u/s. I love the comments I get with that one..."they LET you do that?" "I thought you HAD to have u/s?" etc. I do wonder what u/s would have showed with Oli's pregnancy and my (discovered after the fact) low-lying placenta...probably would have freaked out more than one tech LOL Thanks for sharing your experience and thoughts.
ReplyDeleteI think women get WAY too many U/S these days. In my DDC all these women were sharing pics from their 6 week, 8 week, 12 week, 18 week ultrasounds! REALLY?? Is all that exposure safe? Especially when they are getting them done at those "ultrasound boutiques." Those just seem all kinds of iffy. You'll have the rest of your kid's life to look at him, right??
ReplyDeleteI had the one at 20 weeks and that was plenty for me. I fully understand why some women wouldnt want one at all!
From my experience, it's especially if something is wrong that you shouldn't have an u/s. As you said, Rixa, with something like anencephaly, there's nothing to be done about it anyway.
ReplyDeleteOne of my friends was measuring very small for dates in her preg. I broached the subject by saying "You know, if you were in the system, they'd be pushing you to find out what's going on with the baby's size by doing an u/s." She understood what I was saying and said "I know this baby's small. . .I've had 2 previous pregnancies. . but I'm with a different dad and I'm eating really well so we're just going to let it be." The baby was only 4 1/2 lbs at birth, trisomy 18, spina bifida--all of which is incompatible with life. She lived for 3 days and the parents had the peace of heart that they gave her a beautiful home birth, a checkout at the hosp, and then took her home to die with the blessing of the physician (bless him.) When that woman became preg once again after that loss, she didn't have an u/s and had a healthy baby. I thought she was very wise.
Your point about projecting personal bias onto patients is something I read about all the time. Doctors cite their experience repairing rare 4th degree tears as a reason for wanting a c-section (for themselves or for their partner), even though they know how rare it is. I guess they think they're being helpful by pushing c-sections.
ReplyDeleteI think it's unrealistic to expect that any human would not be shaped by his or her experience, or that they won't bring their own philosophies to the office. Unfortunately, this includes health care providers. I guess that the pinnacle of professionalism is that this won't happen, most importantly in medicine, but not everyone can be professional. Kind of depressing, and I don't know how to change it.
ReplyDeleteWhen I was reading this story, I was reminded of my college friend, who was in tears because she was sad that I was going to hell since I didn't believe in God. It reminded me of your situation in the sonographer's room- do you respond graciously and say, "Thank you for your concern." or do you try to explain your point of view? I guess it depends on how much energy you have when confronted with the situation? :) I think I would take the easy way...unless I was easily ticked off that day and then maybe I would be very ungracious and roll my eyes on the way out.
Not to metion you could've kicked her butt just for bringing up fatal anomalies. She needs to learn to express her opinion about the importance of ultrasound without trying to scare a nice pregnant lady- how tacky of her.
I'm still ticked off about her citing all the bad things they can find using ultrasound.
ReplyDeleteI mean, studies or no, old studies or new studies, I just don't believe that fear is a good reason for doing something.
I tend to be more "mainstream" in many of my views about birth that you, but I think that the ultrasound tech was WAY off base to say what she did to you. I am an RN and I am assuming that ultrasound techs are expected to display the same type of professionalism as nurses and doctors. Her advice and views, offered when not solicited, seem to be far outside of her scope of practice. I would honestly consider complaining about her.
ReplyDeleteInteresting. I often mention to my husband he is using a negative filter to view his life, but I can also understand--when you've had first hand experiences with some serious issues (rupture, for example), it would definately affect your opinion. When the odds of something are 1 in 1000, it's easy to think you'll never be that 1. But once you've been that 1, you can have a really hard time believing there are 999 chances to not be that 1. Must be hard for medical folks too--get sued if you do, get sued if you don't. Tough subject.
ReplyDeleteI think many modern health care providers mistakenly believe that the worst thing that can happen is not knowing about something ahead of time. There have also been lawsuits for "wrongful life" where parents have sued for not being offered the chance for prenatal diagnosis and presumably the opportunity to terminate a pregnancy. I'm a big fan of evidence, and of understanding just what a test can do for you when you are choosing to have it. So for ultrasound, yes, there are some rare things that it is useful to know about ahead of time (placenta previa being a big one), but I also feel it is quite reasonable for such rare events to choose not to have pre-knowledge. Now, if you'd had 4 previous cesarean sections, I think an ultrasound for placental location is reasonable caution.
ReplyDeleteWhen I am counseling clients on any prenatal diagnostic, I always ask them to consider for themselves what they would do with positive results, and negative results, and results that would require furthing testing to confirm, and decide FOR THEMSELVES whether the information would be useful or not. Frankly, the grand majority of my clients want ultrasound, because they want to look at the baby, but I have only a minority who choose quad screening (the maternal serum AFP and other marker screen for Down syndrome.) If a client declines ultrasound (which I've only had happen twice in almost 450 clients' prenatal care) I have no problem with that. I want as much as possible to shift the responsibilty for decision making to my clients, as they are the ones who have to live with their decisions. Clients who don't want to hear about the risk/benefit discussion of any particular intervention or test give me hives, because I feel that when the client doesn't want the responsibility for making decisions, they are placing far too much responsibility in my hands. The client who routinely tells me "oh, whatever you think is best" tends to get more tests in my practice because it would later be hard for me to defend not doing standard modern obstetric tests when that is not the express wishes of the client.
I had a huge argument with one of the CNMs I was seeing during my second child's pregnancy over routine ultrasound and maternal serum AFP testing. (I had declined both - I had a misdiagnosis of IUGR which made my pregnancy extremely stressful with #1, so I didn't want any ultrasound that had no medical indication with #2) The CNM kept insisting that I was being extremely irresponsible to not find out if the baby could have Down syndrome or other anomalies, and actually had me in tears at one point. I finally managed to get her to leave me alone by pointing out that I had no risks factors for any anomalies (not that this makes the risk zero, but it does mean that no particular vigilance seems called for), and on top of that, I was planning to birth at a tertiary care center anyway, where surely any physical problem could be dealth with immediately! My little one was perfectly healthy in the end (although I was wrong about her place of birth as she was my accidental UC!)
Good for you for standing up for what you feel.
ReplyDeleteI, too, chose not to have ultrasounds for some of the reasons you mentioned and others.
Like homebirthing (or UC), sometimes there is no way or need we'll ever shift someone's thinking.
We follow our intuition, an oft overlooked tool.
Loving all your thoughts, as always. So much wisdom in this space, in your heart space.
I feel I deal with similar situations working with undergraduate students teaching women's studies - they can't move away from the micro analysis - if it happened to them or someone they know, then it is true and an essential part of life. I think this is a huge cultural barrier we face where the individual is so highly valued that it hinders macro level thinking (or just simply 'bigger picture'), it blows my mind. I am not looking for total and complete objectivity - just taking a minute to step back and think beyond your personal experiences (or how personal experiences are affected and influenced by structural and institutional happenings).
ReplyDeleteThanks for sharing, you always provide some food for thought.
I found my thoughts full of conflict here. I have never had a woman refuse routine screening by ultrasound at 20 weeks, in the UK it is called an anomaly scan and, if it had been on offer when I had my babies I would have gone for it. On the other hand though I do have a small number of women refuse the nuchal screening at 12 weeks (US and bloods, to assess the risk of Downs Syndrome), and I would have declined this test too.
ReplyDeleteWhy the difference? I would not terminate a pregnancy due to fetal abnormality. personal decision so there is no benefit, for me, from having the nuchal.
However, I would wish to have the anomaly for a number of reasons. Number of babies, I have a fear of twin-to-twin as my sister had a third trimester pregnancy loss due to this. Vasa previa - relatively rare but I have seen it and it's outcome. Placenta previa, same as vasa previa. Severe cardiac anomaly, where birth at a specialist hospital would ensure immediate, appropriate care.
I think that what I'm trying to say is that I would want the US to identify a condition which could have the potential to harm my baby so everyone would be prepared and appropriate action would be planned.
I advise women every day about these 2 'routine' scans. I give them the information in an unbiased form, I hope. It is there choice, I do not live their lives and should not presume to know what is best for them.
Personally, I would want to have the 20-week ultrasound done, to rule out multiples, and check the position of the placenta. I guess multiples can be diagnosed by palpating the uterus, but I don't think there's any other way to find out if you have a condition like previa. Also, it's possible that the baby could have a condition that isn't incompatible with life, but that would require special care immediately after birth, which might necessitate giving birth in a hospital. What are your views on this?
ReplyDeleteAs I read your post I kept thinking of the quote at the very beginning of Obstetric Myths vs. Research Realities:
ReplyDelete"Facts can be disproved, and theories base don them will yield in time to rational arguments and proof that they don't work. But myth has its own furious, inherent reason-to-be because it is tired to desire. Prove it false a hundred times, and it will still endure because it is true as an expression of feeling...It is illogical--or at least, pre-logical; but from this very fact it gains a certain strength: logic may disprove it, but it will not kill it."
Molly
I don't plan on having an ultrasound for the next one. I was under the impression that generally, you only have an ultrasound during pregnancy if there is an indication of a problem, or if you want to know the sex of the baby. We don't want to know, and we want a very low-intervention, de-medicalized experience next time around, in complete contrast to our first pregnancy/birth. I think that should be among the many choices available to women, but not forced on women.
ReplyDeleteAnd I think that tech was out of line.
I heart doctorjen! Thanks for everyone's thoughtful comments so far.
ReplyDeleteTara--yes, those reasons could be ones to accept an ultrasound, just not ones strong enough for me at this point. Now if I did suspect multiples at some point (based on fundal height measurements that were getting more and more off, or palpation, etc) I might very well get an ultrasound to confirm/rule out multiples and see if they share the same sac, etc.
A 20 week US is pretty useless for confirming placenta previa because most low-lying placentas at 20 weeks won't be a problem later on. In other words, you'd need more ultrasounds anyway much later in pregnancy to see if you you did have a true previa.
It's not that ultrasounds can't be very useful tools--it's just that for me, I don't feel the need to have one routinely at this point.
Thank you, Rixa. I wish that more HCPs (and others) could look at a bigger picture rather than operating their medical practice from a place of fear. I had 2 ceasarean births for that reason. Even when the 1 in 1000 is me, it made me feel better when I was getting the whole picture.
ReplyDeleteMy mom is a L&D nurse at the local teaching hospital. We just do not talk about my vbacs, my hbacs or our UCs.
ReplyDeletePartly because I'm a smart aleck when pushed, and last time she asked what dh would do if I ruptured, I said I had a mail order bride saved online, and he just needed to click proceed to check out. She was not amused.
I'm always impressed by people who can pull out the studies. I know all of them, I've read them, but under pressure, my mouth gets away with me. sigh
Wow Rixa! Quite a lot of 'conversation' here! So I'll just jump in - I agree with you 100% (:
ReplyDeleteAs a doula, the only fetal demise that I've attended (in over 150 births) was when a mom had many 3D ultrasounds. She had a family member that worked at one of those "Baby Keepsake" shops. She would go into the shop after hours just to watch her baby play. I didn't think anything of it until after the birth. I did a lot of research as baby 'seemed' perfect. We dressed baby and took pictures and spent time with her - a very holy event.
Here's some of what I found.
"Unexplained fetal deaths Even with all of the advances made to date it has been estimated that there are as many as 12-50 percent of stillbirths with no identifiable etiology..." ref:
http://www.med.yale.edu/obgyn/kliman/placenta/articles/UpToDate.html
FDA Cautions Against Ultrasound 'Keepsake' Images, article ran in the U.S. Food and Drug Administration Consumer magazine Jan-Feb 2004. The bottom line states, "Why take a chance with your baby's health for the sake of a video?"
http://www.fda.gov/FDAC/features/2004/104_images.html
The FDA was going to investigate but I'll bet the almighty $$$ changed all their best intentions.
This article also says, "American Institute of Ultrasound in Medicine (AIUM):
The AIUM advocates the responsible use of diagnostic ultrasound. The AIUM strongly discourages the non-medical use of ultrasound for psychosocial or entertainment purposes."
I say, If God intended us to see our babies before they are born He would've put a window in our bellies! Love to all of you, Rosie
Hello! I am new to this blog and this is one of the first posts I have read so far. I had to comment, and I hope you forgive me if this is a long one.
ReplyDeleteI am one of those women who had a baby with an unexpected diagnosis of Down syndrome. We are not so rare. I was 28 and he was my first. The pregnancy went well, but he measured small at my 20 week ultrasound. Without doing additional testing, they assumed I had miscalculated the date of my last period and pushed his due date 3.5 WEEKS. When I asked about the AFP (quad) test I had read about in books, the doctor in the very catholic hospital said, "Why would you want that test? You wouldn't DO anything about a baby with issues (meaning abort), would you?" Being naive, never-before-pregnant, awestruck by this revered family OB, I of course said, "Oh no!" and we went from there.
Unfortunately, at my "40" week visit, he had quit moving, and after a fetal monitoring, they decided to do an emergency c-section. He came out floppy, blue, and his Apgar was a 1. My placenta was aged. He was dry -- no amniotic fluid. They couldn't stabilize him and they took him away. I hadn't even seen his face. The neonatologist came into recovery and told us to prepare for the possibility of his death, and also that it looked like he had Down syndrome. We could not believe it. I had never felt better during my pregnancy, and although I kept measuring small, I was confident he was going to be a fat, healthy curly haired little baby with rosy cheeks. But he was a sick, sick baby, who had severe pulmonary hypertension, who was waaaay overdue.
They were finally able to stabilize him, and we spent a long difficult road in the NICU. He is healthy and beautiful now at seven years old, but he has issues that are directly related to his traumatic birth, one being muscle/ligament damage in his neck from being pulled out while so floppy, and he suffers with pain from it today. We also suspect that he has brain damage from going so long without oxygen. He is much further behind developmentally than his peers with DS and cannot speak. The question for me has always been, why couldn't they see that nuchal fold at that 20 week u/s? Was he just too small, measuring at 16 weeks? Why didn't they do a follow up? Why did they discourage the testing when it could have helped him?
I guess what it all comes down to for me is, I KNOW that if he had been diagnosed with DS in utero, he would not have had the birth that caused him so much damage and pain. It would have been monitored, on TIME, and most likely, much more peaceful. People sympathetically ask me if I "knew" before he was born that he was going to have DS. I know many of them mean that if I didn't, than poor me didn't get the chance to "give him back to God."
I'll keep him right here with me, thank you very much...lol
I am sorry about the tech who harrassed you about your choices. She should have just let you have your informed opinion and moved on. But being informed is key. My story could be anyone's out there.
Thanks for reading!
Rixa--as a mother and midwife who gave birth to three, get that, 3, children with serious, life threatening ( two of them, in fact, died ) disorders with no family history or positive genetic markers for anything....I no longer feel that ultrasound is a bad idea. It isn't simply a matter of whether one would terminate a pregnancy etc. Had I know, for instance, that Mary had spina bifida, I would have planned the c section that was truly necessary for her birth and avoided the crash, weird, and frightening for everyone emergency 'section' necessitated by her turning transverse from vertex the morning I went into active labor. There are good reasons to get a scan and having no "history" or assuming "low risk" is, in my experienced viewpoint, not valid.
ReplyDeleteI read back on your comments and I want to respond, a bit, to Gloria Lemay's comment: I too, gave birth at home, to one of my sons who died from a still undiagnosed genetic neuromuscular disorder (that's all we've got; it also took our other son, Samuel, 4 years later ) but while his life/death were peaceful and lovely, the investigation by CPS etc. was not. Any time a child dies at home when not under a Physicians care, there will be investigation by law enforcement and CPS. It doesn't matter whether the baby has something "wrong" that is incompatible with life; the law is the law. We had no control over who came to our home, or who talked to our other children. I still wouldn't recommend diagnostic US to every client but I think we could have been better prepared, and better protected, from the tragedies we've suffered, had we gone ahead and had the screens done. It's nice to believe that everything is "under control" but nothing in nature is "under control" and that includes birth, and death.
ReplyDeleteI used to strongly believe that the possible risks of prenatal ultrasound outweighed the benefits. I've seen ultrasound pictures online where the babies seem to be covering their ears, poor things. I didn't see the point.
ReplyDeleteThen I had to do IVF to have a baby. And the 'standard of care' for IVF is constant ultrasounds, especially in the first trimester. I think I had about ten u/s by 13 weeks. Then when I transferred from my clinic to an OB and didn't have an ultrasound until the typical 20 weeks, well, it felt like I was missing something! How could I know my baby was okay when I didn't get to see it every few days?!?!?!?!?
Because of other issues (I have some clotting factors, I was on heparin and prednisone for the duration of pregnancy, etc) I ended up having weekly ultrasounds for the last trimester too. I think at this point, it was a lot of CYA from my OB. She wasn't the one who prescribed the heparin and prednisone (the IVF clinic did) but she had the responsibility if something did go wrong either from the drugs or from the clotting factors, so she wanted to be very cautious. I don't blame her. I chose a hospital birth with an OB due largely in part to those very clotting factors, so I knew what I was getting into when I signed up for a medicalized pregnancy.
Personally, I think it's funny how my own views changed. I wanted to have an all-natural pregnancy and instead got the whole shebang. I'm thrilled that I managed to avoid the pitocin and epidural and that I am still nursing my two year old. Those were the most important to me and I've succeeded.
I would love to have more kids and I would love to deliver with a midwife but that's a decision I will have to make if I am so blessed as to get pregnant again. I think, given my history and risk factors, it really is safest to deliver in-hospital, although I would love to have a midwife catching (or even better, helping ME catch!).