25 replies to this topic

[bebe1000]

have had a heck of a time. I read these forums all of the time hoping for some insight but this is my first time to join and post. I have 1 perfect baby girl from IVF 2 years ago. But we only had 3 embryos and did a 3 day fresh transfer with all 3 resulting baby girl. This time around we ended up with 2 on day 3 and did a fresh transfer on day 3. High betas then at 6.5 weeks we did an ultrasound and dr diagnosed me with twin blighted ovums, offered D&C that day. I decided not to because my husband was out of town, went back in for d&c Monday and found a heart beat. Baby has grown each week by at least a week or more. heart beat is to 174 but the baby is consistently measuring 5 days behind. Dr is worried about a genetic abnormality but I cannot do the traditional blood test because of the twin that was lost. So I just stay up all night trying to understand where I am in my process, unable to enjoy pregnancy without extreme worry. 

I am looking for the good the bad and anything in between in personal experience with this. 

[mouse]

So sorry you're dealing with this.  How far along are you now? Has chorionic or amnio testing been discussed?

[dragnfly]

I have no experience or insight I can offer you. But I saw your post and wanted to let you know someone is praying/worrying w you. Lots of great ladies here. Go to the introductions page and post as well. Maybe you will meet someone here who can give you some encouraging words spoken from experience.

All my best to you

[bebe1000]

Monday I was measuring 8 weeks one day (still five days behind) with heart rate of 174. I am not super familiar with the testing terms but my fertility dr. says that we will not be able to do a first trimester genetic blood test because the twin that didn't make it will show up in the results and there will not be a way to distinguish between the 2 sets of dna, if that makes sense.

I have a call in to a genetic specialist to get her opinion. I have read on many forums that fresh transfers often measure small. That it could be late implantation. That 5 days is the common margin of error this early. And I hoped that maybe politics were at play throwing genetic worry in this early in the game because I was upset about the misdiagnosed blighted ovum but my Obgyn suggested a specialist as well.   

[mouse]

While the blood work can be skewed by the presence of a twin or vanishing twin, neither CVS nor amnio testing should be affected.  There are some places that are able to do an amnio as early as 11 weeks but most start around 14 weeks; and of course both amnio and CVS testing come with their own risks/disadvantages.

 

A second opinion/specialist consult sounds wise.  Fingers crossed for you!

[farmwife]

I have no advice, but just wanted to wish you the best as you go through this trying time.

[bebe1000]

I guess I was also hoping for maybe some success stories from IVF babies measuring behind this early if anyone has one to share...... Just looking for other answers besides genetic problems.

[mouse]

Lots of women have gone on to success after measuring behind at early appts. Measuring this early is not an easy task and there certainly can be inaccuracies.  Seems to me that these, however, would not be likely to consistently present week after week though, but others may have different experiences to share.

[GraceM]

((Hugs)) Certain NIPT can be done with twins and CVS/amnio can still be done.  Your doctor should refer you to a genetic counselor.

[Raspberry]

I'm not an expert by all means....but measuring 5 days behind doesn't sound that bad to me...?! It's still so early I your pregnancy...can you get a second opinion...?! Do you have a good MFM clinic where you live?!
My friend got pregnant last year from a frozen day 3 transfer. Her betas were low...baby's HB was soo low till week 9! 120-130!!! Dr's were telling her no hope!!!!! She did NIPT came back with great results....and she has a baby girl...big big girl...!!! So please don't loose hope...talk to as many doc as you can. Find the best one!!! Hang in there....170 HB is great your little guy is a fighter!!!! Stay positive and try not to stress too much! Xxxx

[nervus optimist]

My son was measuring 6 days behind. Doctor said it was basically a wait and see situation. So I googled the heck out of it. If an embryo is over a week behind then the likelihood of a successful pregnancy are extremely low, but less than a week and it really is a situation where anything can happen. Also - a strong heart beat, and less than a week behind is generally considered great reason to be optimistic. At that age they are so small and measuring tools are not precise, even the angle that they are looking at the embryo can change the measurement. In our case the embryo was measuring 6 days behind and heartrate was 'lowish' (I think 110). Then a few days later I had a massive bleed and was convinced it was all over. Turns out it was a subchorionic hematoma, and when they measured again embryo was right on track and heartrate was up, and 7 months later (just a bit ahead of schedule) a perfect baby boy was born. I had basically weekly ultrasounds the whole first trimester to keep an eye on how things were going to make sure that growth was ok and because the spotting continued for a long long time.

 

I'm honestly surprised that your doctor has jumped to talk about genetic issues so early in the game. If the embryo continues to grow and continues to have a strong heartbeat then hopefully that is an amazing sign of magical things to come.

Fingers and toes crossed that you get some comforting news moving forward.

[bebe1000]

My son was measuring 6 days behind. Doctor said it was basically a wait and see situation. So I googled the heck out of it. If an embryo is over a week behind then the likelihood of a successful pregnancy are extremely low, but less than a week and it really is a situation where anything can happen. Also - a strong heart beat, and less than a week behind is generally considered great reason to be optimistic. At that age they are so small and measuring tools are not precise, even the angle that they are looking at the embryo can change the measurement. In our case the embryo was measuring 6 days behind and heartrate was 'lowish' (I think 110). Then a few days later I had a massive bleed and was convinced it was all over. Turns out it was a subchorionic hematoma, and when they measured again embryo was right on track and heartrate was up, and 7 months later (just a bit ahead of schedule) a perfect baby boy was born. I had basically weekly ultrasounds the whole first trimester to keep an eye on how things were going to make sure that growth was ok and because the spotting continued for a long long time.

 

I'm honestly surprised that your doctor has jumped to talk about genetic issues so early in the game. If the embryo continues to grow and continues to have a strong heartbeat then hopefully that is an amazing sign of magical things to come.

Fingers and toes crossed that you get some comforting news moving forward.

Many Many thanks for this. I kind of thought that maybe there were a bit of politics at play when this dr mentioned genetics so early. A good friend who is going through this with me thinks maybe he is trying to cover for the other Dr who suggested a d&c at 6 weeks 2 days when he saw what he thought was twin blighted ovums. I also have a subchorionic hematoma but that is slowly getting smaller. I go back monday for another ultrasound in hopes that I am measuring closer to 9 and a half weeks. 

[nervus optimist]

hugs. it is so stressful. and you might be onto something with the politics. As a heads up, if you have had a SCH and do IPS there is a very high likelihood of a false positive result for spina bifida. I didn't know that before deciding to do the IPS, and got a false positive and it was ridiculously stressful until it was ruled out at the anatomy scan. If it was me and I had to do it again I never would have done the IPS screen. The main things that IPS screen for are Down's Syndrome (which we would not have terminated a pregnancy over) and spina bifida (which we also would not terminate a pregnancy over but would push to explore if we were eligible for intrauterine surgery), and spina bifida can be detected on US alone. It is a highly personal choice, and maybe the decision for me would be different without the SCH but if I am ever lucky enough to get PG again and do have another SCH I personally will not do the IPS.

 

I've got fingers and toes crossed that your next US shows a beauitful baby growing! And sometimes you even see them start to squirm and wave that far in, or a tiny bit farther. I have heard that as long as the growth is consistent (i.e. measuring a week bigger after a week) then the actual days behind doesn't matter as much. Hang in there.

 

[bebe1000]

hugs. it is so stressful. and you might be onto something with the politics. As a heads up, if you have had a SCH and do IPS there is a very high likelihood of a false positive result for spina bifida. I didn't know that before deciding to do the IPS, and got a false positive and it was ridiculously stressful until it was ruled out at the anatomy scan. If it was me and I had to do it again I never would have done the IPS screen. The main things that IPS screen for are Down's Syndrome (which we would not have terminated a pregnancy over) and spina bifida (which we also would not terminate a pregnancy over but would push to explore if we were eligible for intrauterine surgery), and spina bifida can be detected on US alone. It is a highly personal choice, and maybe the decision for me would be different without the SCH but if I am ever lucky enough to get PG again and do have another SCH I personally will not do the IPS.

 

I've got fingers and toes crossed that your next US shows a beauitful baby growing! And sometimes you even see them start to squirm and wave that far in, or a tiny bit farther. I have heard that as long as the growth is consistent (i.e. measuring a week bigger after a week) then the actual days behind doesn't matter as much. Hang in there.

 

You have no idea what this kind of post means to me. Thank you for this information and thank you for the encouragement. I will most certainly keep all of this in my notes when I get to meet with the specialist for the testing. And hopefully we are just measuring great on Monday and our worry goes down a bit. Many Many thanks and big hugs to you! 

[freshview]

((Hugs)) Certain NIPT can be done with twins and CVS/amnio can still be done.  Your doctor should refer you to a genetic counselor.

[freshview]

Unfortunately NIPT cannot be done with twins.

As for CVS and amnio, it depends where you are. The earliest you can get amnio done is about 10 weeks, but I'm in London and the OBs here will only do CVS as early as 12 weeks and amnio as early as 16.

I am empathetic to your stress of having to wait to get answers. It's so hard carrying a baby that you love, but know might be unwell.

[rollergirl]

NIPT blood testing is not recommended for twins as one doesn't know which DNA is which .....and sorry that you are going through this. I had one of my guys measuring early and everything turned out .....huge stress though.....good luck!

[GraceM]

Verifi NIPT (which is done through Mt. Sinai hospital in Toronto) can be done with twins but it cannot be used to determine sex.  If there is a positive screen, the test cannot tell which twin is which so you would have to move on to CVS or amnio.

[Raspberry]

Any new update bebe1000?!

[ilovemydogs]

Just saw one here
https://ivf.ca/forums...s/#entry1931978

[bebe1000]

Hi! my last 4 ultrasounds have been perfect. No soft signs of any problems. measuring 5 days behind consistently. Still going to just speak with the genetic specialist to ease my mind. One of my girlfriends is so angry that a Dr suggested that I have a D&C at 6 weeks 2 days. That would have been such a tragedy. I have been so worried about the possibility of a genetic abnormality that I guess I have not thought about what a costly diagnosis that would have been. She wonders if I am able to take action. 

 

But at the end of the day I am 10 weeks 6 days pregnant with a baby that looks perfect on the ultrasounds. Will hold good thoughts. Many thanks to all. Especially those who commented and that help others through these times. You are such dear people. I am so thanksful. 

[mouse]

Yay! Fingers crossed for all to unfold smoothly from here on out!

[bebe1000]

I have progressed perfectly and the genetic counselor was appalled that the dr ever suggested that something may be wrong with the baby. She said there is no literature that in anyway indicates embronic pause is an issue with genetic abnormalities, even going so far as to call the dr in front of me to ask him what he has ever read to indicate why he told me this. He had to say no he has never seen anything on this either, then mentioned that the other dr jumped the gun in suggesting a d&c. So j am feeling really good about everything. 16 weeks and 150 HB just yesterday. I never thought I would get through those days but time does go on and it gets better. Just hang in there!!!!! You never know! Thanks to all who supported me!

[dragnfly]

Bebe- so glad to hear your little one is healthy & growing. Been thinking about you.

[Heregoesnothing]

So happy to hear this story. I hope you can now move forward with a little more confidence that this little bean is here to stay.