Sleepless' Story - Wanted to Wait Until Sac Was More than 25mm!

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Sleepless' Story - Wanted to Wait Until Sac Was More than 25mm!

Postby Sleepless » Fri Nov 03, 2017 4:55 pm

Yesterday I joined the league of the misdiagnosed. Still reeling from the shock of it all, the last weeks have been an emotional rollercoaster to say the last. Story follows below...

STATS:
Age: 41
LMP: 09/14/2017
Date of Ovulation: 09/28/2017 (CD14 indicated by Clearblue advanced fertility monitor)
BFP: 10/10/17 (CD27 indicated by Clearblue advanced fertility monitor)
Diagnosis Blighted Ovum: 10/27/2017 (CD44 - 6 weeks 2 days- empty gestational sac, 14mm, immediate D&C recommended)
Baby found: 11/02/2017 (CD50 - 7 weeks 1 day - embryo with heartbeat, CRL 4.4mm, gestational sac 27mm)
No data on HCG: I live in The Netherlands and HCG levels are not measured here. When I asked why I was informed the norms are too variable for HCG tests to be reliable.

I was thrilled to have a positive pregnancy test but also nervous, given my advanced maternal age and having had a pregnancy 3 years ago that ended in complete natural miscarriage (spontaneous bleeding) at 5 weeks 4 days. This time I was taking no chances, I found a local midwife practice (in The Netherlands we do not have scheduled hospital visits) on Google that seemed to have good reviews and requested a scan as soon as possible. Since I'd had no bleeding this time, I assumed all was well and we were excited about the first scan.

After searching for several minutes to see anything (apparently my uterus was "hard to find"), the sonographer told us this "wasn't the scan she wanted us to have" and that the sac was totally empty, no yolk, no cellular material, nothing. We asked what is that pixel in the middle but she told us it was nothing. The size 14mm conformed with my dates 6 weeks 2 days, so she diagnosed a blighted ovum and said all that would happen further was that the sac would continue to grow but remain empty until I miscarried, and that there was no point to wait as a D&C or abortion pill would speed the whole process up. In total shock and disbelief I felt the blood rushing away from my head and waves of nausea coming over me, stood to leave for the bathroom and immediately fainted - luckily my boyfriend caught me - I was out cold for 5 minutes. Later that day I spoke to a midwife and she told me "you can wait but it will not change the diagnosis". I searched the net for days seeking stats and norms, realising it didn't look good but still wanted a second opinion knowing that in the UK and US the guidelines say 25mm.

Going for my second scan I was terrified, dreading the confirmation of what was already diagnosed. I'd spent all week inbetween willing my body to bleed, preferring a natural miscarriage over a D&C or medicine. I'd convinced myself this pregnancy was over. I cursed my painful, swollen breasts and wondered why the hell my body still didn't realise I wasn't having a baby after all. We informed the new sonographer at a new practice about the case history. Imagine all our shock when within a second of starting the internal scan, the three of us saw a gestational sac with embryo and a heartbeat. We were stunned, yet the surprise brought more concerns: the embryo is too small for 7 weeks, CRL just 4.4mm, it should be twice that size. Nonetheless, it is there, alive, where last week we saw a black hole, now it's heart is beating in me.

We will return again for another scan next week to see if there is regular growth. Given that I know my ovulation date, it seems either this baby is just a very slow developer, the scan measurements are inaccurate, or something really is wrong with it's growth, if that's the case then we read that is possibly caused by a chromosomal issue. All of this makes me remain nervous for a miscarriage. Right now we just don't know, but one thing we know for sure: we are giving it a chance, something the first sonography and midwife denied it with a misdiagnosed blighted ovum. I can't tell you all has ended well for us yet, but to those of you who have been told you have an empty sac, please check the guidelines and insist on a second opinion. The waiting is dreadful of course but my god I'm glad I didn't follow the advice for an immediate D&C. The midwife from the first practice called me today and told me they would be reviewing the case and their guidelines. She said however after a clear diagnosis of blighted ovum I was in the 1% of cases that go on to develop an embryo. I don't believe her. Perhaps like you reading this now, I thought these stories only happened to other people on internet forums. I thought there was no hope after a diagnosis from a professional. Until it happened to me.

I don't want to raise false hopes, just to share my own experience.
To those of you that have lost your babies, I am very sorry. What fragile lives we hold in us.
Good luck to you all.
Sleepless
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Re: Sleepless' Story - Wanted to Wait Until Sac Was More than 25mm!

Postby Kay » Tue Nov 07, 2017 3:52 pm

I am so glad you waited. I don't buy the 1% statistic AT ALL for obvious reasons. (((hugs))) to you and I hope you update soon :)
-------------------------------
To read my own Misdiagnosed Miscarriage stories:
my blighted ovum scare
Told I was miscarrying at 12 weeks

Blogging on Misdiagnosed Miscarriages
If you are being diagnosed with a blighted ovum after IVF, please take a look at this article I put together: Misdiagnosed Miscarriage After IVF
and why I just believe a blighted ovum should NOT be diagnosed before nine weeks at the earliest and the UK's new guidelines support this


This post is for informational purposes only. This information is not intended to replace information given by your physician but rather intended to supplement that information.
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Re: Sleepless' Story - Wanted to Wait Until Sac Was More than 25mm!

Postby Sleepless » Fri Nov 17, 2017 5:03 am

Thank you Kay for your kind words. Unfortunately I don't have good news to share. Last week (at 8 weeks according to my dates) I had a scan that showed growth on track from the previous week and still a strong heartbeat, embryo was measuring 7 weeks, so for a couple of weeks the signs were all good and we were hopeful that this baby was maybe just a slow starter. Yesterday, one week further we had another scan and saw that the heartbeat had stopped when it was measuring 7 weeks 4 days. Heartbreaking news for us. Seems this little one just wasn't strong enough to make it and sadly we now await the inevitable miscarriage.

From the exhilaration of a positive pregnancy test, to the total shock of a misdiagnosed blighted ovum, then the jubilant hope after seeing a heartbeat and the surrender when hope is suddenly lost, the last weeks have been a complete emotional rollercoaster. For anyone going through something similar: the waiting is terrible but necessary. Nature took it's course in the end but we can at least be content that we gave this little life it's very best chance. No one else decided that it was over. Sometimes things just go the way they go without any apparent reason and out of nowhere a heartbeat did appear, if only for a short while. If I would face this situation again I would pay less attention to early scans, measurements and (so-called) professional judgements and let be what will be.
Wishing you all patience, serenity and courage in such times.
Last edited by Sleepless on Wed Nov 22, 2017 6:17 pm, edited 1 time in total.
Sleepless
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Re: Sleepless' Story - Wanted to Wait Until Sac Was More than 25mm!

Postby Sleepless » Mon Nov 20, 2017 2:15 pm

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Sleepless
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Re: Sleepless' Story - Wanted to Wait Until Sac Was More than 25mm!

Postby Kay » Sun Dec 03, 2017 6:16 pm

Oh no! I am so very sorry. Huge (((hugs))) for you. This just breaks my heart.
-------------------------------
To read my own Misdiagnosed Miscarriage stories:
my blighted ovum scare
Told I was miscarrying at 12 weeks

Blogging on Misdiagnosed Miscarriages
If you are being diagnosed with a blighted ovum after IVF, please take a look at this article I put together: Misdiagnosed Miscarriage After IVF
and why I just believe a blighted ovum should NOT be diagnosed before nine weeks at the earliest and the UK's new guidelines support this


This post is for informational purposes only. This information is not intended to replace information given by your physician but rather intended to supplement that information.
User avatar
Kay
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Posts: 7774
Joined: Sat Feb 19, 2005 4:38 pm

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