And, Even More on the Unreliability of Ultrasound Measurements During the First Trimester

Over the last week, I've blogged a bit on the unreliability of ultrasound measurements during the first trimester.

Women have shared that they have had two different ultrasounds the very same day by two different techs and measurements have been quite different. 

I've also pointed out, that this discrepancy in numbers has also been noted.  In the article Does Ultrasound Sometimes Misdiagnose Miscarriages on WebMD, they had this to say:

"The fourth study explored the accuracy of ultrasound measurements when repeated by the same doctor, and also by a different doctor. Although the repeated measurements were largely similar, there was enough variation to raise concern - particularly when the measurements were close to the cut-offs used in guidelines to diagnose miscarriage. For example, if one doctor measured the sac as being 20 millimetres in diameter, the range for the other doctor’s measurement varied from 16.8 to 24.5 millimetres."

In pregnancy a difference of 4mm can 'make or break a pregnancy' from a physician's point of view.  If the sac *looks* too small,  they can diagnose a miscarriage and try to push a D&C.  We see that all the time on the Misdiagnosed Miscarriage site.

So, this week when yet another mom posted that her pregnancy was being doomed (chromosomal abnormalities, miscarriage) based on the measurements of the yolk sac, I cautioned her to take that information with a grain of salt.  I'll post more on the 'yolk sac scare' in a future post.  Just in a nutshell, we've had women report being given little to no hope based on yolk sac measurements and their babies were just fine.

After continued prodding to have another ultrasound scan, everything was measuring just fine.  In fact, the ultrasound tech rechecked the previous ultrasound photos, did measurements on them and, you know what happened, she got different measurements off the EXACT SAME PHOTOS.  The measurements had been completely normal and almost half what the first tech had said!

Moral of this story?  You can take the exact same ultrasound photo and two different techs can get two different measurements.  Don't stress the measurements.   There is a really good chance that no matter what measurement you get, it's off.


(((hugs))) to anybody going through a miscarriage scare right now. 

When Healthy Pregnancies are Misdiagnosed as Ectopic!

I must admit, writing about ectopic pregnancies makes me a bit nervous.  Ectopic pregnancies are serious and can be life threatening.  For this reason, let me start by saying, if you are diagnosed with an ectopic pregnancy, stay very closely monitored. 

We've had a number of viable pregnancies misdiagnosed as ectopic on the Misdiagnosed Miscarriage site, and, for that reason, I do think it is important that women know that these pregnancies may be misdiagnosed as well.

I wrote a page on this topic:  Is This Really An Ectopic Pregnancy  (worth a look if you are going through this scare).

Most important thing to note, ABC News reported that up to 40% of ectopic pregnancies are actually intrauterine and not ectopic at all.  Wow, 40%, that number still amazes me.

While doing a bit more reading, I came across this medical study:

Am J Obstet Gynecol. 2011 Dec;205(6):533.e1-3. doi: 10.1016/j.ajog.2011.07.002. Epub 2011 Jul 20.

Outcome following high-dose methotrexate in pregnancies misdiagnosed as ectopic.

Nurmohamed L¹, Moretti ME, Schechter T, Einarson A, Johnson D, Lavigne SV, Erebara A, Koren G, Finkelstein Y. 

Abstract

OBJECTIVE:

The objective of this study was to report the outcomes of intrauterine pregnancies misdiagnosed as ectopic and exposed to methotrexate, a major teratogen.

STUDY DESIGN:

We report the outcomes of all subjects who sought consultation after exposure to high-dose methotrexate to induce abortion in presumed ectopic pregnancies, which were later identified as viable intrauterine pregnancies by 3 North American Teratology Information Services between 2002 and 2010.

RESULTS:

Eight women with normal, desired pregnancies were administered high-dose methotrexate in the first trimester because of presumed, misdiagnosed ectopic pregnancies. All pregnancies resulted in catastrophic outcomes. Two pregnancies resulted in severely malformed newborns with methotrexate embryopathy; 3 women miscarried shortly after exposure, and in 3 the erroneous diagnosis led the physicians to advise and perform surgical termination.

CONCLUSION:

Erroneous diagnosis of intrauterine pregnancies as ectopic with subsequent first-trimester exposure to methotrexate may result in the birth of severely malformed babies or fetal demise.

What to take away from this study:  Doctors are recognizing that they are, on occasion, misdiagnosing viable pregnancies as ectopic.   Mothers need to recognize this as well.  If they see the sac outside the uterus, your doctor knows what to do.  If no gestational sac is visible anywhere, talk to them.  Get a second opinion if needed but make sure you waste no time.  We have had women tell us they've taken the medication and later found out they still had a viable pregnancy.  But, serious complications may arise if you take this medication with a viable pregnancy. 

As always (((hugs))) if you are going through this scare. 

More on the Unreliability of First Trimester Ultrasounds

Doctors are so quick to tell us how accurate the first trimester ultrasound is.  On the Misdiagnosed Miscarriage site, we've been hearing it for years but we've also known it's not true.

If your doctor is telling you how accurate the first trimester ultrasound is, take a moment to look at an abstract of this study published in 2012:

Fertil Steril. 2012 Nov;98(5):1091-6. doi: 10.1016/j.fertnstert.2012.09.017. 

When is a pregnancy nonviable and what criteria should be used to define miscarriage?

Bourne T¹, Bottomley C.

Abstract

In 2011, the first systematic review of the evidence behind the diagnostic criteria for miscarriage was published. It states, "findings were limited by the small number and poor quality of the studies," and concluded that further studies were, "urgently required before setting future standards for the accurate diagnosis of early embryonic demise." This implies that data used to define criteria to diagnose miscarriage are unreliable. The 2011 Irish Health Service executive review into miscarriage misdiagnosis highlighted this issue. In parallel to these publications a multicenter prospective study was published examining cut-off values for mean sac diameter (MSD) and embryo size to define miscarriage. The authors also published evidence on expected findings when ultrasonography is repeated at an interval. This led to guidance on diagnostic criteria for miscarriage in the UK changing. These new criteria state miscarriage be considered only when: an empty gestation sac has an MSD of ≥ 25 mm (with no obvious yolk sac), or embryonic crown rump length ≥ 7 mm (the latter without evidence of fetal heart activity). If in doubt, repeating scans at an interval is emphasized. It is axiomatic that decisions about embryonic viability must not be open to doubt. So it is surprising how little evidence exists to support previous guidance. Any clinician working in this area knows of women being wrongly informed that their pregnancy has failed. This cannot be acceptable and guidance in this area must be "failsafe."
Copyright © 2012 American Society for Reproductive Medicine.

So, what does this mean?  These researchers bemoan the lack of studies for diagnosing a miscarriage.   This is something we've recognized on the site and if we could get doctors to listen to these researchers, it would cut the number of misdiagnosed miscarriages greatly. 

I put together a page some time ago What You May Not Know About a Blighted Ovum which discusses the inaccuracy of the current ultrasound guidelines.  By the ultrasound guidelines, my baby should have been a blighted ovum because the gestational sac was still empty looking at 21.5mm.  One week later, we saw our little baby be-bopping away in there and the sac was measuring 28.5mm. 

I like the new criteria used in the UK of 25mm for the gestational sac.  I know this would greatly cut down on misdiagnosed miscarriages. 

If your gestational sac is less than 25mm, looking empty and the doctor is mentioning miscarriage. click on the link in the article and print out that abstract.  Give him a copy.  You may just change his mind and you just may save future babies. 

As always, (((Hugs))) if you are going through a miscarriage scare right now.

Ultrasound Measurements in the First Trimester Are Not as Accurate As You Might Believe and Lead to Misdiagnosing Miscarriages!

I've talked to thousands of women since I shared my misdiagnosed blighted ovum story.  I am convinced that the first trimester ultrasound measurements are not as accurate as your doctor may have you believe.

Why do I believe this?  For a couple of reasons:

- I've had women tell me they've had ultrasounds done the same day by two different techs and the measurements are quite different.  Please remember, this is a person doing the measuring using the equipment.  It is subject to human error and interpretation.

- Quite a few women now have known the exact day of conception; They've had no doubt.  Yet, the ultrasound measurements are one to two weeks behind.  This happened with me as well. 

So, until recently, women would ask for any research to take to their doctors and until recently, there has been done.  We've collected story after story after story but some doctors like to put their faith in research and not real life experience.

I would like to direct you to a WebMD article that perhaps your doctor might take a bit more seriously:

Does ultrasound sometimes misdiagnose miscarriage?

Take the time to read it if you believe your doctor may be diagnosing you a bit too quickly based on ultrasound measurements.

In a nutshell, this article tells how there really are very few studies on ultrasound accuracy and are older studies as well. 

A newer study in the UK found that if a doctor diagnoses an impending miscarriage based on the fact that the gestational sac is 20mm with no baby, they are going to end up misdiagnosing some pregnancies.   Indeed, I had an ultrasound where the sac measured 21.5mm with no baby.   My doctor was a firm believer that the ultrasound guidelines were correct and really pressured me to end my pregnancy.  Fortunately, I refused...repeatedly! 

I can tell you what I also believe from the many women who have shared their stories:

- Doctors who do their own ultrasounds tend to make mistakes far more frequently than fully-trained ultrasound techs.  Techs have been through school to learn their trade.  Doctors go through a very short course.  They don't have anywhere near the same level of training with the equipment.

- More important than measurements is just seeing the baby or sac grow each week.  Of course, the article points out that even that isn't fullproof.  Human error.  One person's measurement is not always the same as another person's measurement.  That article points out the measurements sometimes vary by 8mm or more!  When you are looking for a growth of 1mm a day, 7mm a week, being off by eight mm can definitely lead to a misdiagnosis.

- The only true test of a blighted ovum is time.  I know waiting is torture.  I've been there.  I had to wait almost a month and fully expected to miscarry.  And, sadly, there are no guarantees.  Often a miscarriage diagnosis ends in miscarriage but, if there is even a slight chance, think of yourself a year down the road, will you look back and kick yourself for not waiting a couple extra weeks?

No matter what, always stay closely monitored and seek second (and third and fourth) opinions if you feel your doctor is diagnosing you too soon.

(((hugs)))

Creating A Misdiagnosed Miscarriage Video

They say a picture equals 1000 words.  My hope this year is finish a video for The Misdiagnosed Miscarriage site.  Already, I've had a number of women send me baby photos of their own little misdiagnosed miscarriages.  I'd love to fit in as many as possible.

If you've had a misdiagnosed miscarriage baby, would you consider sharing a baby photo for this video?  I am a big believer in web anonymity so I'll link to your story at the site but would prefer to use usernames rather than real names.  Just send the baby photo to my email address at misdiagnosedmiscarriage@gmail.com along with the link to your story.  I'll be showing the video to the families of these babies first to be certain they approve :)

While it would be awesome to have a viral video to get the word out there, I know that is very unlikely to happen.  Women are interested in this topic for a short duration of time.  My hope is to just have a video that gives each one of these women hope during an incredibly difficult time. 

Thank you!

Demanding a New Ultrasound Scan

Why is it, as women, we are often to scared to question our doctors and ask for better care?  I've talked to so many women who just feel their doctors should not be questioned because they are the professionals.  That is why I recommend over and over and over (well, you get the idea) second opinions.  For those women uncomfortable with questioning their physicians, perhaps that second (or third or fourth) doctor will be a little more proactive -or- at the very least, enough time will pass between appointments that more may be seen and a better idea of how the pregnancy is progressing.

I keep saying it but I'll say it again:

A blighted ovum should NOT be diagnosed before nine weeks. 

If you are diagnosed before nine weeks, yes, this may be a blighted ovum.  They're common but too many women on our site, including myself, found our babies at about nine weeks even those of us CERTAIN of our conception dates. 

I read a story this month of a mom who on the day she was to end her pregnancy demanded another ultrasound.  So glad she did:

Mom told to take abortion pills to remove ‘miscarried’ baby asks for second scan: finds baby alive

Now, keep in mind, even if that scan had not found her baby, unless she was more than nine weeks (and certain of her dates), she should have waited.  I went through almost a full month of scans before finding my own baby.

There are no guarantees but, at the very least, you deserve to have no doubt your pregnancy is non-viable and if they are saying blighted ovum, they cannot know that with 100% certainty before nine weeks.  I really believe that.  If there are no complications, waiting it out is the only way to know with certainty.

As always, a big (((Hug))) to anybody going through a miscarriage scare right now.

(for more on why I really believe doctors need to wait to diagnose a blighted ovum:  A Blighted Ovum Should Not Be Diagnosed Before Nine Weeks)

Blogging about Misdiagnosed Miscarriages!

Ten years ago, you would be hard pressed to find any information on misdiagnosed miscarriages online or otherwise.  How do I know?  While enduring almost a month of a misdiagnosed miscarriage, I scoured the web searching for any hope.  The hope just was not there.   I tried search engine after search engine.  I visited numerous pregnancy and miscarriage sites.  I just wanted hope.  I felt as if I was stuck in limbo.  I didn't quite fit in on the pregnancy boards because, well, the doctor claimed I was about to miscarry and I didn't fit in on miscarriage boards because I hadn't miscarried yet.  True, women on the miscarriage boards embraced me and were kind but they gently encouraged me to have the D&C and move on with life.  Eventually, two women on two different boards emailed me and gave me hope.  They didn't know how this would end but they didn't believe it was over until it was over.

Thank goodness for those women.  Nobody else understood.  I was inconsolable and my family was at a loss.  Even then I was encouraged to just let the doctor take care of things.  Miscarriages happen for a reason.  Many women miscarry and go on to have a perfect baby, so on and so forth.  Just to have somebody say they understood was an amazing comfort in such a turbulent time.

As a result of my misdiagnosed miscarriage, The Misdiagnosed Miscarriage site sprang up.  Over the years, we've collected more than 600 misdiagnosed stories on the site.  Do a search online, there are many more being shared on pregnancy sites and blogs across the web.  Each and every new misdiagnosed story gives women hope.  It doesn't mean that they are misdiagnosed but they know they can indeed wait out a miscarriage diagnosis if there are no serious complications.  It is far better to miscarry knowing there was no doubt than to question whether your doctor took your baby too soon.  I hear from too many of those women.

And, most exciting, the media is picking up on these stories.  As I find new information and stories on misdiagnosed miscarriages, I'll be sharing them on this blog.  I know, speaking for myself, I was consumed with reading all about miscarriages and misdiagnoses while I went through this scare.  Perhaps. if you are in the same boat, you'll find some comfort here.  As always, a huge (((hug))) to any and all going through this scare.