Saturday, March 28, 2015

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

If you are being diagnosed with a blighted ovum just based on your hCG levels and no baby being seen, your doctor is wrong.

Let me repeat...

Your doctor is wrong!

If your doctor has not been telling you the size of your gestational sac, you need to ask.

Going to repeat again...

Blighted Ovum scare?  Ask the size of your gestational sac at each appointment.

If this is a blighted ovum scare, you don't need ultrasounds every two to three days.  This is self-defeating.  It'll leave you worried.  Gestational sacs need time to grow.  They don't grow much in two to three days.   If your pregnancy is indeed viable, your baby needs time to grow and be seen.  Give it a week. 

You can wait longer but, really, the waiting is torture, a week is fine.  Please, keep in mind, I had to go almost a month before finding a baby in my gestational sac and the sac measured 28.5mm.  At only 21.5 mm, it still looked empty.

I know you are worried but if there are no serious complications (i.e. threat of ectopic, infection, etc...) make sure your ultrasounds are scheduled one week apart. 

Also, so important, once that gestational sac is seen, hCG levels do NOT need to be taken.  They can rise, plateau or drop and this can still be a viable pregnancy.  I have talked to women whose hCG levels were over 100,000 before they found their babies.  I've talked to women whose hCG numbers seemed to plateau around 30,000 to 40,000 and then went on to find their babies.

So what should the size of the gestational sac be before a blighted ovum is suggested?
I love the UK's new guidelines.  I oft repeat them because these guidelines would do away with the majority of misdiagnosed miscarriages.

The gestational sac should measure at least 25mm before a blighted ovum diagnosis is even suggested. 

Want to know more about these guidelines?  I blogged on this last year:

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

If you are in a pregnancy forum here online, share this page!  Yes, some women will miscarry but you may prevent somebody from ending their pregnancy while there still might be a viable pregnancy. 

The take away from this blog post.  If you have seen the gestational sac, stop focusing on the hCG levels.  Focus on the growth of the gestational sac

- and -

just to throw another wrench into the works...

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

Your ultrasound tech may get a different measurement than another ultrasound tech.  For absolute certainty, if there are no complications, you may want to wait one week after the gestational sac reaches 25mm to verify the empty sac.

Yes, a blighted ovum diagnosis is one of the most miserable diagnoses you will ever receive.  The waiting is torture but a number of women have waited it out and found their babies.

Saturday, March 21, 2015

After the Miscarriage was Misdiagnosed - One Mother's Letter to the Hospital and Their Response

Often when you find out that your diagnosed 'miscarriage' is actually a viable pregnancy, the shock and joy are overwhelming.  Many women continue on with their pregnancies and these doctors continue to misdiagnose miscarriages. 

Some women go on to write letters to their physicians and the hospitals or medical centers where they practice.  If we want to prevent misdiagnosed miscarriages, I think this is a great idea.

Several years ago, Kerry shared with me her misdiagnosed story and asked me to share it on The Misdiagnosed Miscarriage site: 


Later she emailed me to share that her baby boy had been born!  So exciting.  She also shared with me the letter she sent to the hospital as well as their response.  I asked permission to share this letter/response and she gladly gave it.  Hopefully this letter can help other women when they have been misdiagnosed.

Here is Kerry's e-mail to the hospital (I've blocked out any identifying dates and names blocked out for privacy reasons): 
Hi there,
 
If you could please pass this on to the manager of your obstetric ultrasound department it would be greatly appreciated.
 
This email is regarding an early pregnancy ultrasound that I had performed at your xxxxxx department on xx xxx xxxx, ref: xxxxxx (see attached scanned report)
 
Basically I was told that my ultrasound appearance at 6 weeks 5 days, was consistent with a blighted ovum but I’m now happily 17 weeks pregnant!  I understand that the doctor’s report (Dr xxxxx xxxxxx) needed to simply describe what the ultrasound found, however, I think they should have quantified their conclusion with a statement that these early scans can sometimes be wrong and that further monitoring is advised (given these early assessments have been wrong in the past and that there are some factors that can influence the image). For example, I had a tilted (retroverted) uterus which I wasn’t aware of until a later scan (and the lady performing my initial scan at xxxxxx didn’t notify me of this and I feel she should have, given this can interfere with the image and is quite a common occurrence especially in second pregnancies).
 
After doing some research on blighted ova, I found out that my story can be a rather common occurrence – they receive a few cases each month apparently, on the following website: www.misdiagnosedmiscarriage.com/mycommunity
 
In conclusion,  I just wanted to write this email in the hope that future blighted ovum ultrasound reports may hopefully have a quantitative/explanatory note at the bottom of them, outlining that these early scans can sometimes be incorrect and for the patient to follow up with later scans if they want to. This is in the hope that people don’t rush out to have a curette performed (like I was intending to do) when they may indeed still be pregnant.
 
Thank you for your time.
 
Regards, Kerry

and I will share the hospital's response (again, I've blocked out any identifying names for privacy reasons):

(you may click on the image of the letter for easier reading)

We do know that dates are often one to two weeks of with a tilted uterus and, thankfully, more and more doctors seem to be recognizing this as well.  In fact, I excitedly blogged this last year when I found the American Pregnancy Association was finally acknowledging the link between the retroverted uterus and 'hidden' babies.  Here is that post:


Also, in reference to the letter, I also believe miracles happen but in the case of blighted ova being misdiagnosed, really, it's not so much a miracle when the baby is found as much as it is a patient doctor who waits until a growing gestational sac is at least 25mm before even suggesting a blighted ovum.

Thursday, March 19, 2015

When Ultrasound Techs "Misdiagnose" Your Baby's Gender

I was just watching a sweet video in which family was shocked to find out the new baby was a boy.  They were shocked because they had been told during an ultrasound that they should expect their second daughter.




Same thing happened to us only we were told we were having our second son.  Indeed my own daughter (yes, the one who was also the 'blighted ovum') was determined to be our son at our second trimester ultrasound. 

My husband and I already had a son and decided we just wanted to be surprised at the next birth.  We told the doctor this a number of times and the ultrasound tech.  This was our longer second-trimester ultrasound.  She took all sorts of measurements but made sure not to refer to the baby's gender.  After awhile, another ultrasound tech came in to take her place.  They spoke for awhile.  As the new tech took over scanning, I was just getting ready to make sure she knew we didn't want to know the gender when she announced excitedly that it was a boy.  Sigh...she saw our disappointment.  Not because the baby was a boy but because we had wanted to be surprised.  She apologized profusely.  Toward the end of the ultrasound, she said let me take one more look.  She took a couple minutes and told us "Not to count our chickens before they were hatched," but she'd already announced our 'son' and this was to be our last ultrasound.

And, so we prepared for our baby boy.  Thankfully, I still had a lot from my son so I didn't spend too much.  I did buy a new stroller and carseat, both in light green.  I also bought a bouncy seat in blue but that was about it. 

So, my water broke and long crazy story short but we get my husband home from another state before they take me in for my C-section.  With my husband standing there holding my hand, they pull out our baby and announce, "It's a girl!" 

Whoa, total shock!  I had two doctors in there and I remember I just kept asking, "Are you sure he's a girl?"  They'd laugh and assure me *she* was a girl.  Hubby even assured me the baby was a girl but he just looked like he was in shock so I didn't put too much stock in his assessment.  Finally, they had her cleaned up and brought her over.  Yep, noticeable lack of body parts.  She was a girl!

So amazing!  It took me a month or so of changing diapers before it really sunk in I think.  I had just gone about four or five months believing she was a boy. 

And, that girl is all girl.  She's my dancer and my musician.  She loves life to the fullest and she has made our world a brighter place.

So, yes, even gender can be 'misdiagnosed' during pregnancy :)

 
My Baby Girl

Wednesday, March 18, 2015

Four Misdiagnosed Miscarriages and a Baby!

After my own misdiagnosed miscarriage scares, I love that women now have a place online to wait out their own miscarriage diagnoses.  Often a miscarriage is a miscarriage but there have been too many misdiagnosed over the years to ignore. 

I started the Misdiagnosed Miscarriage site in 2005.  Wow!  Just realized the site is a decade old.  So many miscarriages have been misdiagnosed in those ten years.

Although I try to keep up with the site, I also keep this blog and write informational pages on Hubpages.  I find that my articles off the site help get the word out there that sometimes miscarriages are just diagnosed too soon.  Along with keeping up with those comments as well as emails I receive daily, I don't often have the time I would like to spend on the site. 

Today I was playing a bit of catch up.

I was able to share four women's stories on the Misdiagnosed Miscarriage forum and got to read the update of one woman whose misdiagnosed miscarriage was born!

Let's start with Trish's story.  Trish's doctor for some reason had the antiquated notion that with hCG levels over 10,000 a baby should be seen.  She was only five weeks when he decided she needed a D&C the next day!  Thankfully, Trish decided to seek a second opinion.  Just one week later and her baby was found with a strong heartbeat.
My thoughts:  This doctor was so irresponsible in his diagnosis.  I have no doubt he has taken far too many babies, far too early.  I can't say it enough, hCG levels are NOT important.  If they are in the normal range, they can rise, plateau or even drop and still be normal.  Also, we have had women whose levels were well over 100,000 before even seeing their baby on an ultrasound. 

Our next two stories are IVF stories.  Strawberry and Clara both were diagnosed after undergoing IVF.   Strawberry looked a week behind and, at her next appointment, was told that her hCG levels were not doubling in two days so, without a doubt, this was not a viable pregnancy.  Clara's doctor could not see her baby at 5 weeks 5 days and also said without a doubt this was a miscarriage.  Both women were told they needed D&Cs.  Both women were misdiagnosed.
My thoughts:  Misdiagnosed miscarriages after IVF are far too common.  I found a study some time ago that stated that up to 1 in 3 women undergoing IVF look smaller on the ultrasound and their babies are found later.  Even with IVF, I'm a firm believer that a blighted ovum should never be suggested before nine weeks.  Here is the page I put together on Misdiagnosed Miscarriage After IVF.
At about six and a half weeks, Karlita was rushed to the ER by her husband.  She was diagnosed with hyperemesis gravidarum.  The ultrasound showed only an empty sac and she was told that she needed to prepare to miscarry or have a D&C.  Fortunately Karlita had another ultrasound where they found their baby's heart beating away.
My thoughts:  Doctors in the ER are wonderful.  They save lives every day but they are not experts in every field.  They are also overworked and, too often, rushed.  For this reason, unless there is an immediate need (i.e. positive ectopic diagnosis or some other serious condition), getting another opinion if you haven't actually miscarried is strongly advised.  Too many pregnancies are misdiagnosed in the ER as being miscarriages.

And, last but not least, our misdiagnosed baby!

Jennessn was rushed in for an ultrasound last year due to bright red bleeding.  At only about five to six weeks, they only saw the gestational sac.  Right then and there, they determined the pregnancy was non-viable.  Then, because the hCG levels has only risen from the 4000s to 6000s in 48 hours, that cinched it.  They told her this could be ectopic and her doctor's office was trying to schedule her for a D&C.  Thankfully, she sought a second opinion.  Her baby boy is now five months!

My thoughts:  I'm so excited for Jennessn!  Those doctors were so wrong.  It can be completely normal to have an empty-looking gestational sac up until nine weeks or so and her hCG numbers were rising normally.  Too many women are misdiagnosed.  Second opinions can save lives.