I Am All A'Flutter Over the Miscarriage-Diagnosing Guidelines in the UK!

I've just been so busy with end of school year activities that I haven't gotten as much of a chance to sing the praises of the new guidelines for diagnosing a blighted ovum. 

First, let me just tell you why I am all a'flutter:

- We have a paper by doctors, for doctors to give to our doctors.  Without something solid in JAMA or some peer-reviewed journal, some doctors won't give any credence to the idea that they could actually misdiagnose a miscarriage.  I know, you're saying, but what about all the stories from women who have been misdiagnosed?  They are purely anecdotal to some physicians and they just won't listen.  Now, we can print out the new guidelines and take them in!

- It's all about the gestational sac!  We need to quit worrying about hCG levels (they can rise, plateau and fall and still be normal).  We can quit worrying about looking one to two weeks behind.  Finally, doctors are getting it, measurements can vary from one tech to another tech to another tech.  Measurements, not so important.  What is important is watching the gestational sac grow.  If it is growing, keep monitoring once a week until it gets over 25mm and, then, wait one more week for a follow-up ultrasound to verify.  What a coincidence, eh, that that puts most women in the nine-week range which is what we've been saying for years.  A blighted ovum should NOT be even suggested before nine weeks.  

- Most Importantly, if doctor's follow these new guidelines, many babies will be saved and many women will be spared the fear and stress that comes alongside a possible miscarriage misdiagnosis

- Oh, and one more, I can retire from the misdiagnosed miscarriage business!  Okay, well, there will still be misdiagnosed miscarriages.  Although most are misdiagnosed blighted ova, I do talk to women who are misdiagnosed for other reasons (i.e. ectopic, molar, bleeding, etc...) but this would definitely give me a bit more free time! 

 If you want to know more about these guidelines, check out one of the following links:

 CG154 Ectopic pregnancy and miscarriage: full guideline - the study I'm all a'flutter over (take note, clicking this link will download this as a pdf)

Misdiagnosed Miscarriage? The UK Has Changed their Guidelines. Your Doctor Needs to Take Note. (this also happens to be my previous post)

New Blighted Ovum Guidelines! You ARE Being Diagnosed Too Soon! - a page I put together to help women understand the new blighted ovum guidelines 

 

 

 

 

 

 

Misdiagnosed Miscarriage? The UK Has Changed their Guidelines. Your Doctor Needs to Take Note.

Several years ago, I followed with great interested the reports of misdiagnosed miscarriages in Ireland.  Over the years, I've talked with women in Ireland who have felt pressured to end their pregnancies too early.  After several women ended up finding their babies, the press took note and a health scandal was all the buzz. 

Now, truthfully, doctors in Ireland weren't any worse than doctors in England or the U.S. or Australia or any of the other countries from which I hear from women quite frequently.  But, misdiagnosed miscarriages did make the news and, in a country that seriously frowns on abortions, this was big news.

Here is an example of one news story: 
Babies may have died after miscarriage misdiagnoses

I, along with many other women, have eagerly waited to see what changes the medical community would make in response to this scandal.  I decided to see what changes have been made and found these newer guidelines from December 2012:

Royal College of Obstetricians and Gynaecologists  CG154 Ectopic pregnancy and miscarriage: full guideline(downloadable as a pdf).     

I can think of so many posts I could make on these guidelines.  For today, I'd like to concentrate on one flow chart in particular and focus on empty-looking gestational sacs.

(click on image to view larger)

Two things stand out here.

First, unless the gestational sac is measuring 25mm or more, doctors should wait seven more days for a follow-up ultrasound. 

Second, if the gestational sac is indeed measuring 25mm or greater, one of two options is recommended.

A)  Perform a scan seven or more days later before verifying

B)  Seek a second opinion.

These guidelines are from 2012 but we on the Misdiagnosed Miscarriage site have been suggesting these options to women for a number of years.

I truly believe that if all doctors followed these guidelines, most viable pregnancies would never be misdiagnosed.  We still have misdiagnosed miscarriages due to bleeding and suspected ectopic pregnancies but the vast majority are due to empty sacs. 

So, what can you do if your doctor is giving you no hope due to an empty-looking sac?

First, print out this chart.  Go to the link and get the full-sized chart.  Take it to your doctor.  Your doctor may not know about the misdiagnosed miscarriage scandal in Ireland.  Standards are changing.  Don't wait for your country to have its own scandal.  Take charge of your pregnancy and discuss these guidelines with your physician.  These standards will absolutely save many viable pregnancies.

As always, if you are going through a miscarriage scare, (((HUGS)))



           

No Heartbeat or Baby seen at Seven Weeks? Finally, the Medical Community Recognizes it Might Be Because of Your Tilted Uterus

Okay, this excited me.  I can't believe what I'm reading from the American Pregnancy Association!

If an ultrasound is done at 6 to 7 weeks and a heartbeat is not detected, does that mean there is a problem?

No it does not mean there is a problem. The heartbeat may not be detected for reasons that include: tipped uterus, larger abdomen, or inaccurate dating with last menstrual period.

When I had my blighted ovum scare, there was absolutely nothing I could find online about misdiagnosed miscarriages.  I found denials that they ever happen.  I found literature discussing how accurate first trimester ultrasounds are and that babies are always seen by seven weeks at the latest.  Even on miscarriage boards, women tried to convince me to just have the D&C so that I could move on.  One miscarriage board administrator even messaged me to tell me miscarriages were NEVER misdiagnosed. 

Fast forwarding past my misdiagnosed miscarriage and sharing my story online.  I started receiving emails from women wondering if they might be misdiagnosed and then finding out that they were!  Over time, I started seeing a pattern.  Not only were many of these women eight or nine weeks (with some being even further along than that!) but the vast majority had a tilted uterus.

I went on an email writing frenzy sharing what I had learned with researchers all over the world.  Many did not return my emails.  Some very kindly told me I was mistaken:  A tipped uterus wouldn't make a difference because first trimester ultrasounds were the most accurate.  I did have a couple of researchers who first told me there was no link and then later emailed to say something along the lines of, "Y'know, after thinking about it, I did have this one case..." or "My colleague just had this one case where he really believed it was a miscarriage."    Nobody really bought into the tilted uterus thing though.  As for me, I had no doubt. 

Fast forward to today.  I'm reading this page from the American Pregnancy Association and THERE IT IS.  Reasons include a tipped uterus. 

You don't even know how amazing that was to read.  Nobody wanted to do the research but over the years we've collected so many stories of women misdiagnosed due to a tilted uterus.  The medical community is listening.  Your stories are making a difference!  How many more babies will be saved now because more and more doctors will delay requesting that D&C. 

This is truly exciting stuff!

A Blighted Ovum CANNOT Be Diagnosed at only Six Weeks!

Let me just start by saying this:

A blighted ovum should not be diagnosed before nine weeks at the earliest!

I believe this wholeheartedly because at the Misdiagnosed Miscarriage site, many women were told they had a blighted ovum at eight weeks or before and, then, at nine weeks, they found the baby! 

Of course, this doesn't happen all the time but, because it does happen, I firmly believe that any doctor who diagnoses a blighted ovum before nine weeks is diagnosed too soon.

Now, that said, this last week alone, two women posted who had turned down D&Cs and found their babies.  Both women were only six weeks along.

Joanne's Story

Sonia's Story

I really believe these doctors were beyond irresponsible.  I understand why a doctor will suggest a D&C after seven weeks.  The ultrasound literature is wrong and indicates that at seven weeks, if a baby is not seen, it is a blighted ovum.  THIS IS WRONG!  Just want to make sure you understand that.  If I had listened to my doctor and had my D&C at seven weeks, my daughter wouldn't be here (and, if I'd listened to my doctor and had it at eight weeks, she wouldn't be here).  We're trying to get the word out there and there are doctors who are listening and finally research coming out showing that seven weeks is too early to diagnose.

That said, though, there is absolutely no excuse for a doctor to diagnose a blighted ovum at six weeks.  Unless there is a serious emergency, there is no reason to have a D&C for a blighted ovum at only six weeks.

If your doctor is diagnosing a blighted ovum at six weeks, you need a new doctor.  These are the doctors that worry me most.  These are the doctors who have very likely misdiagnosed other miscarriages and ended viable pregnancies. 

If you are diagnosed with a blighted ovum at six weeks, please, find a new doctor and stay monitored.  If you do end up finding your baby, you might want to consider filing a complaint.  You may save another baby's life.

As always, if you are going through a misdiagnosed scare right now, (((hugs)))

Stories from Women Who Turned Down a D&C for Miscarriage and Later Found Their Babies!

Over the years on the Misdiagnosed Miscarriage forum, the one message that appears time and again is

A BLIGHTED OVUM SHOULD NOT BE DIAGNOSED BEFORE NINE WEEKS (at the earliest!).

Today, I've spent some time reading some of our misdiagnosed stories and if doctors had just waited until nine weeks to diagnose that empty sac, the vast majority of those women would never have had to post on our site.

Far too many women, myself included, had to turn down a D&C or medicated miscarriage before we found our babies.  I always wonder (and many women have asked), how many mothers have let their doctors talk them into the D&C before nine weeks? 

While there is always a possibility the doctor is correct and the pregnancy is indeed a blighted ovum, if there is still hope, the pregnancy should not be ended before nine weeks.

We have hundreds of stories on our site, but take a look at a few stories from women who would have lost their babies if they just didn't say, "No, thank you," to ending the pregnancy:

My own story:

When a Blighted Ovum is not a Blighted Ovum

Some of our most recent stories (at the time I'm posting this):

Misdiagnosed blighted ovum at 6 weeks. Turned down D&C

 

Jreiko's Story - Turned down D&C Heartbeat found one week later

 

CWalker's Story - Slow Rising hCGs. D&C Refused. BABY FOUND!

 

Jennessn's Story: Tilted Uterus. Diagnosed Too Soon!

 

Rbeki's Story - Bleeding and Misdiagnosed in ER

 

Brittany's Story - For Three Weeks, Doctor Sure of Miscarriage

 

These are only a few of the many stories we have collected so far.  We can say, without a doubt, doctors are ending pregnancies too early.  If you are not yet nine weeks and there are no serious complications, ask to wait out your diagnosis.  It won't be easy but you don't want to look back a year down the road and ask yourself why you didn't wait those extra weeks.  You deserve to know with 100% certainty and if you are not yet nine weeks, there is still hope. 

 

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

 

 

 

 

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.