Misdiagnosed Conditions During Pregnancy

Although I tend to blog on misdiagnosed miscarriages, far too many women are misdiagnosed in other ways during pregnancy.

I've shared my story about how my son was misdiagnosed as having Down Syndrome.  We refused to terminate.  You can read that story here: 

My First Misdiagnosed Miscarriage at 12 Weeks!

I hear stories like this quite a bit and, indeed, here is yet another story of a family who was given the option to terminate:

 Misdiagnosis or divine intervention? Baby given no hope to live, born completely healthy

I do wonder how many women terminate their pregnancies when everything really was fine.  I know, with my own ultrasound, our son showed the markers of Down Syndrome.  Really, though, even had he had it, we wouldn't have minded.  He was our son and like any parents, we were going to adore him to the moon and back.  We were surprised when he was born without Down Syndrome though.

If you are going through a diagnosis of this nature, I urge you to seek non-medical counseling as well.  All too often the medical community just sees the diagnosis and you need to talk to somebody who sees the bigger picture. 

When Good Pregnancies are Misdiagnosed as Molar Pregnancies

Every so often on The Misdiagnosed Miscarriage, women share that their doctors have diagnosed a molar pregnancy and are pushing for a quick D&C.

Now, a molar or partial molar pregnancy is quite serious.   A molar pregnancy is when the mother's chromosomes are somehow 'lost' and the father's chromosomes are duplicated.  In a partial molar pregnancy, the father's chromosomes are duplicated again but the mother's remain as well.  This can happen with duplication or if two sperm fertilize the egg.

According to the Mayo Clinic, about 20% of women who have had a molar pregnancy will develop gestational trophoblastic disease.  This happens when the tissue remains and continues to grow.  You'll see hCG levels rise as well.  When this happens, chemotherapy may be needed.  Very rarely this will turn into cancer.  Generally, a complete molar pregnancy can be detected by about nine weeks. 

As you can see, you should take a molar pregnancy but I was reminded today of how frequently good miscarriages are misdiagnosed as being molar as in Gabrielly's story.  We've been emailing back and forth.  She was being misdiagnosed too soon with a molar pregnancy.  We've had other similar stories as well, such as Heather's story and Dani's story. 

I have a suspicion that some doctors *may* use the molar diagnosis to pressure women into having a quick D&C.   Very few pregnancies have ended up being molar in my years on the site.  Those women seemed to have really high hCG levels (over 100,000) or other signs (i.e. grapelike clusters, pain, bleeding, etc...).  Reading through online literature and it sounds like partial molar and molar pregnancies are often caught at the end of the first trimester and into the second trimester. 

How early can a molar pregnancy be caught?  This is what I've really been wondering since so many women who are being misdiagnosed with a molar pregnancy seem to be between 6-8 weeks.

I found this study:

A prospective study of ultrasound screening for molar pregnancies in missed miscarriages.

"The diagnosis of both complete (CHM) and partial (PHM) hydatidiform moles in first-trimester miscarriages is difficult. hCG is significantly higher in both CHM and PHM and, in conjunction with transvaginal ultrasound, could provide the screening test required to enable clinicians to counsel women more confidently towards non-surgical methods of management of their miscarriage, where histopathological examination is not available."

For this reason, if there is any reason to suspect your doctor is wrong in their diagnosis, you really might want to consider a second opinion especially during the first trimester.  Stay monitored though.

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

Misdiagnosed Miscarriages in the ER - A Real Problem

According to RightDiagnosis.com, misdiagnosed cases in the ER or ICU range from 20% to 40%.  These numbers are huge.

I have been very thankful for ER doctors in the past but, please remember, they are treating everybody no matter what their specialties might be.  They don't have a lot of time with each patient either.  They are going from one room with a car accident victim to the next were somebody has cut his finger with a saw to the room with the toddler with a 104 temperature to the room where a pregnant women is bleeding.

Is it any wonder they don't get it all correct?

A woman just shared her daughter in law's experience.  At just shy of seven weeks, she went to the Emergency Room due to serious cramping.  No baby was visible.  They diagnosed a miscarriage.  Thankfully her DIL did not give up and they insisted on another appointment to verify.  At that appointment, they found the baby.

You may read her story here: 

Gmvallejo's DIL Story: Misdiagnosed in the ER

 I am sharing her story today because we have been seeing these stories for years.  Indeed, I was misdiagnosed in the ER as well and have shared that story.

Misdiagnosed at 12 Weeks

Our site is filled with stories of women misdiagnosed in the ER.  This doesn't mean that every woman that goes in there is misdiagnosed but it could mean that, at the very least, 1 in 4 may be.  This is important because you need to know there may be hope and you may need a second opinion.

I know I keep going on about the new UK guidelines:

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

but if your gestational sac is not yet 25mm, you should not be diagnosed with a blighted ovum.  The new guidelines are good ones and would prevent the vast majority of misdiagnosed miscarriages.  If there are no complications, wait until the sac is 25mm (if it is growing) and then wait one week to verify.  For most women, this will bring them to at least the nine week range before they can be diagnosed.  My gestational sac with my daughter was 28.5mm before my daughter could be seen and at only 21.5mm, it still looked empty.

As always, if you are going through this scare right now (((hugs)))  Feel free to visit the Misdiagnosed site or leave me a message here.

Waiting Until 10 Weeks for a D&C. Is it safe?

Let me just state right up front, I'm not a doctor or medical professional.  In fact, the only 'medical' training I have had was in the Army (yes, I'm a former soldier) who took a combat lifesaver course.  That training involved IVs and what to do if somebody is hit with a grenade....just a little different than this.  I like to state this up front because when I do share 'recommendations', they are recommendations found elsewhere online by trusted sources.

Often, when women are not sure they are really going to miscarry or not, they wonder if it is safe to wait out a diagnosis.  I know my own doctor, as early as six weeks, was putting the scare of future infertility and massive infections into my head.  However, I was really uneasy with the idea of a D&C and I am so glad I was because I now have that little girl who is just a light in my life.

So, is it dangerous to wait out a diagnosis?  I would say no under a few conditions:

• As long as you are staying under a physician's care and will be seen right away if there are complications (i.e. fever, signs of infection, pain, etc...)

• Your physician agrees (and, yes, sometimes you may need a second opinion)

• Your physician has ruled out an ectopic pregnancy 

 And here is where I want to pull out the 'trusted source', in this case the American Pregnancy Association.  On their  D&C Procedure After a Miscarriage page, they have this to say:

"About 50% of women who miscarry do not undergo a D&C procedure. Women can safely miscarry on their own, with few problems in pregnancies that end before 10 weeks. After 10 weeks, the miscarriage is more likely to be incomplete, requiring a D&C procedure to be performed. Choosing whether to miscarry naturally (called expectant management) or to have a D&C procedure is often a personal choice, best decided after talking with your health care provider."

 Without a doubt, D&Cs have their place.  I've seen on The Misdiagnosed Miscarriage that often after ten weeks, women end up in the ER or just needing to schedule the procedure because the miscarriage just won't start.

If you are not yet ten weeks and feeling pressured to end your pregnancy, is there a valid reason?  The very vague 'you don't want an infection' reason isn't a great one.  With all the woman I've talked to over the years, only a small percentage have mentioned getting an infection.  If you are staying monitored and watching for complications, asking to wait out a diagnosis is generally accepted by most doctors and, if you feel your doctor is pressuring you too soon, seek a second opinion.

As always (((hugs))) to anybody going through this scare.

Tilted Uterus and Miscarrying? You Might Want to Skip the Medicated Miscarriage and Here's Why

I like to stay on top of recent first trimester research.  I keep hoping that one day somebody will listen and do a study on the tilted uterus during the first trimester.  We already know on The Misdiagnosed Miscarriage what they'll find.  Women who have a tilted uterus often look one to two weeks behind during the first trimester and are too often misdiagnosed with a miscarriage as a result.

So, it was with some interest I took a look at this study:

Efficacy of misoprostol in relation to uterine position in the treatment of early pregnancy failure

Turns out there may be another problem if you have a tilted uterus.  A medicated miscarriage (where you are given drugs to help along the miscarriage) does not work well with women who have a retroverted uterus. 

I believe this.

Over the years I have had too many women share their 'horror' stories with Misoprostol (Cytotec).  Other women have said, "Aww, it wasn't too bad."   Well, we know that roughly 1/3 of women have a tilted uterus.  We also know that research really indicates that after 8 weeks, a woman with a medicated miscarriage is much more likely to end up with complications.  That rules out a lot of women who should even consider a medicated miscarriage.

I wrote more on this topic here:

Tilted Uterus? If You Are Miscarrying, You May Want to Skip The Medicated Miscarriage.

May want to skip a medicated miscarriage if you:

• are eight weeks or more along
• have had any prior uterine surgery including c-section
• are anemic
• have a tilted uterus
• have any sort of stomach or intestinal disease
• have had five or more births

If your doctor is recommending a medicated miscarriage, please find out if you have a tilted uterus first. 

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

Stories of Women Who Turned Down a D&C due to Blighted Ovum and Found their Babies!

Today I want to share with you a few very important stories.  Each of these stories can be found on the Misdiagnosed Miscarriage site. While not all of these were found at nine weeks or beyond, you can see that they were diagnosed too early.  As I've said over and over, I love the new guidelines that state a doctor should wait until the gestational sac is 25mm and then wait one week more to verify.  That would put women at about nine or so weeks which would prevent so many misdiagnosed miscarriages!

Amanda's Story
Diagnosed with a blighted ovum and encouraged to have a D&C. When she called to schedule the procedure, they decided on one last ultrasound.
Tera's Story
At eight weeks, there was still no baby to be seen in that sac. Tera went home to wait for a miscarriage that never happened. The next week, they found her baby!
Angie's Story
At about seven and a half weeks, there was still no baby seen and the doctor did not like the slow-rising hCGs so she recommended a D&C. Fortunately, Angie declined and decided to seek a second opinion. One week later, they found that little heartbeat!
Dani's Story
Told she had a blighted ovum at eight weeks, she was encouraged to have the D&C. Two weeks later, Dani had another ultrasound and there was her baby!
Es's Story
Es was diagnosed in the ER at eight weeks and told to have a D&C, thanks to the Misdiagnosed Miscarriage site, she decided to wait two weeks at which time they found the baby with a strong heartbeat.
Sarah's Story
At seven weeks four days, Sarah was told she had a blighted ovum. She decided to wait out the diagnosis rather than have the D&C. At nine weeks four days, they found her baby!
Kelli's Story
At only six weeks, Kelli's doctor was concerned about her higher hCG levels and no baby. She turned dow the D&C. Kelli waited and then sought a second opinion where they found that little heart beating away.
MommyToBe's Story
At ten weeks, they were unable to find her baby. She turned down a medicated miscarriage. A week later, they found her baby.
Sher's Story
At seven weeks, Sher's doctor scheduled a D&C for her. Thanks to the many online stories, she decided to cancel the procedure. Thankfully they found their baby the next week.

High hCG and No Baby Found? There is Still Hope and Here are the Stories to Prove It!

These are just a few of the stories from women who have had ultrasound levels between 10,000 and 20,000 with an empty gestational sac. Many times they were told they were going to miscarry or that they needed a D&C and they ended up finding their babies! Because there are so many stories, I am only including a few in this category. Rest assured, if your levels are between 10,000 to 20,000, there is still hope! Of course there is no way to tell how the pregnancy will end but, unless you are certain you are nine weeks or more, it is much too early to diagnose a blighted ovum at this point.

please remember, none of these stories will change the ultimate outcome of your pregnancy. These stories, however, will help you to know if you are possibly being diagnosed too soon.

Angel's Numbers
Empty Sac: 18,875 (with ultrasound)
Five Days Later: 51,266 (no ultrasound)
Heartbeat Found: 9 Days after empty sac ultrasound
Tao's Numbers
Only Yolk Sac seen: 12,954 (with ultrasound)
Two Days Later: 17,095 (no ultrasound) ~ D&C refused
Heartbeat Found: 13 Days after ultrasound
ShelBelle's Numbers
Empty Sac: 19,000 (with ultrasound)
Two Days Later: 26,500 (no ultrasound)
Heartbeat Found: 12 Days later
Christy's Numbers
Only Yolk Sac Seen: 19,000 (with ultrasound) ~ scheduled D&C
Heartbeat Found: 3 Days later
SwollaDad's Numbers
Empty Sac: 13,000 (with ultrasound)
Two Days Later: 25,000 (diagnosed ectopic!) ~ injection to end pregnancy refused
Heartbeat Found: One week + after initial ultrasound
BelievingGod's Numbers
Empty Sac: 23,000 (with ultrasound)
Four Days Later: 33,000 (no ultrasound) ~ D&C scheduled
Heartbeat Found: 13 Days after initial ultrasound
Eprooso's Numbers
Empty Sac: 11,000 (with ultrasound) ~ D&C recommended
Three Days Later: 29,000 (no ultrasound) ~ D&C recommended
Heartbeat Found: 10 Days after initial ultrasound
Jen's Numbers
Empty Sac: 11,000 (with ultrasound)
Six Days Later: another empty sac ultrasound ~ D&C recommended
Heartbeat Found: 13 Days after initial ultrasound
Carly's Numbers
Empty Sac: 19,000 (with ultrasound)
Later that Week: Had a D&C
The Week after the D&C: Baby survived D&C (that baby was born in March 2010)
Otis86's Numbers
Only Yolk Sac Seen: 14,900 (with ultrasound) ~ D&C recommended and refused
Heartbeat Found: Several days after initial ultrasound
Lltruc's Numbers
Empty Sac: 11,000 (with ultrasound)
Two Days Later: 16,500 (no ultrasound) ~ medication to begin miscarriage refused
Heartbeat Found: 7 days after initial ultrasound
Heartbeat Found: Several days after initial ultrasound
Tania's Numbers
Empty Sac: over 9,000 (with ultrasound) ~ D&C refused
Three Days Later: 36,000 (no ultrasound) ~ D&C refused again
Heartbeat Found: 9 days after initial ultrasound

 Over the years, I've talked to quite a few women who had empty-looking sacs with levels over 20,000. Having a doctor say there might still be hope at this point is a very rare thing and, yet, quite a few women go on to find their babies. Again, these are only a few of the many stories we've collected. If you are not more than nine weeks yet, even with higher levels, it is still too soon to know if this is truly a blighted ovum.

Jen's Numbers
Empty Sac: 30,000 (with ultrasound)
Four Days Later: 50,000 (no ultrasound)
Heartbeat Found: 12 Days after empty sac ultrasound
BelieveNPrayer's Numbers
Empty Sac: 32,000 (with ultrasound)
Two Days Later: 45,000 (no ultrasound)
Four Days after Initial Ultrasound: 42,000 (no ultrasound) ~ D&C recommended
Ten Days after Initial Ultrasound: 110,000 (no ultrasound)
Heartbeat Found: 15 Days after empty sac ultrasound
Lori's Numbers
Empty Sac: 11,000+ (with ultrasound)
Another Empty Sac: 3 Days later with hCG levels 27,000+
Heartbeat Found: 11 Days after initial ultrasound
Ally's Numbers
Empty Sac: 38,000 (with ultrasound) ~ refused D&C
Heartbeat Found: 5 Days later
Prayin4You's Numbers
Empty Sac: 25,000 (with ultrasound)
Six Days Later: 38,000 (with ultrasound)
Heartbeat Found: 18 Days after initial ultrasound
Sarah's Numbers
Empty Sac: 16,000 (with ultrasound)
Three Days Later: 24,800 (with ultrasound) ~ refused D&C
Seven Days after Initial Ultrasound: 34,000
Heartbeat Found: 14 Days after initial ultrasound
Sadie's Numbers
Empty Sac: 44,000 (with ultrasound)
Heartbeat Found: 2 Days later
Steph's Story
Empty Sac: 12,000 (with ultrasound)
Three Days Later: 45,000
Second Empty Sac: 7 days after initial ultrasound ~ D&C refused
Heartbeat Found: 14 Days after initial ultrasound
Autumn's Story
Empty Sac: 28,000 (with ultrasound)
Heartbeat Found: 13 Days after initial ultrasound
AspenMommy's Numbers
Empty Sac: 32,000 (with ultrasound)
Heartbeat Found: 2 Days after initial ultrasound
LinBran's Numbers
Only Yolk Sac Seen: 20,000 (with ultrasound) ~ D&C scheduled
Heartbeat Found: 3 Days after initial ultrasound right before scheduled D&C
Ozlem's Numbers
Empty Sac: 22,900 (with ultrasound)
Two Days Later: 32,000 (no ultrasound)
Heartbeat Found: 7 Days after initial ultrasound

These stories are truly amazing because doctors are always certain miscarriage is imminent when levels are over 50,000 and no baby is seen. These stories show that some babies just hide a bit longer and a D&C should not be rushed!

Kim's Numbers
Empty Sac: 66,000 (with ultrasound)
Heartbeat Found: 2 Days later with hCG levels at 90,000
Peanut's Numbers
Empty Sac: 69,000 (with ultrasound)
Five Days Later: 74,000 (no ultrasound) ~ scheduled D&C
Heartbeat Found: 7 Days after initial ultrasound
Katrina's Numbers
Empty Sac: 87,000 (with ultrasound)
Heartbeat Found: 7 Days later with hCG levels at 147,000
GoneToExplore's Numbers
Empty Sac: 52,000 (with ultrasound)
Heartbeat Found: 3 Days later
Tera's Numbers
Empty Sac: 80,000 (with ultrasound)
Two Days Later: 76,000 (no ultrasound)
Heartbeat Found: approximately one week after the initial ultrasound
Ginger's Numbers
Empty Sac: 56,000 (with ultrasound)
Two Days Later: 71,000 (no ultrasound)
Five Days after Initial Ultrasound: 106,000 (no ultrasound)
Heartbeat Found: 6 Days after initial ultrasound

These are only a few of the stories on The Misdiagnosed Miscarriage site.  My hope is that these give you hope.

Because so many women are fixated on hCG numbers (you really shouldn't be), please, check out my blog post:

High hCG and No Baby Seen? FORGET THE hCG! It's All About the Size of the Gestational Sac!

Enlarged Yolk Sac? Yes, You Still Have Hope!

Over the years, I've written pages on various misdiagnosed miscarriage topics.  One of my more-read pages has to do with enlarged yolk sacs.  Because I've had to move the page (sadly the host closed its doors), I have to find a place to share these links and here is as good a place as any.

The takeaway from these stories is that a diagnosis of an enlarged yolk sac does not doom your pregnancy.  Here are the links to some women who continued on in their pregnancies:

One of my hopes by sharing these stories and links is that women who know of other stories or have their own success story will share them here as well.  These are only a few of the stories I've read but, if you've been told there is no hope, these stories will prove your doctor wrong.

Story A:
Stacy was sent home to miscarry by her doctor because her yolk sac was enlarged. Her yolk sac grew to 9mm. Her baby was born perfectly healthy.
Read  Stacy's story,

Story B:
Tulip was measuring about a week behind and the yolk sac measured 9.2mm. She went on to have her beautiful baby.
Read Tulip's story,

Story C:
Tara had a yolk sac measuring 8mm. She's just recently had her 20-week ultrasound and everything looks wonderful!
Read  Tara's story,

Story D:
One concerned husband reported that the yolk sac during his wife's pregnancy measured 8.2mm. They went on to have a healthy baby girl.
Read his story,

Case Study:
Very Large Yolk Sac and Bicornuate Uterus in a Live Birth A case report in which a yolk sac was measured at 8.1mm but resulted in a live birth. This report states that "the quality of the yolk sac might be more important than its size."

Also, if you'll find I've blogged a on the unreliability of ultrasound measurements.  It may just be that your tech was off.  It happens more frequently than you think.

If you end up being diagnosed with an enlarged yolk sac and find out all is well, could you consider sharing your story  at the Misdiagnosed Miscarriage site.  You'll give other women hope. 

Thank you!

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. 

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.