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  1. #1
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    Default Vasa previa

    Hi All,

    10 weeks ago, when I was diagnosed with vasa previa (VP) I headed straight to bub hub for advise and help. Being from a medical back ground I wanted the hard facts (some of which were grim) and most of which did little to allay my fears that my baby might die. If you google VP (which I suggest you dont!!) there are more than a dozen web sites dedicated to little angles who have lost their lives to VP. Its absolutely devestating and impossible not to freak out

    So... I'm now 32 weeks and have found out that what they thought was a vasa previa has indeed, shifted, and may even have been as simple as the baby's cord being misdiagnosed as a vessel overlying my cervix. After trying for this little one for 4 years, spending $100,000 on 7 IVF cycles and an eventually successful egg donor cycle in the US, I can't tell you how stressful the last 10 weeks has been. I am thrilled to have this great news but thought I would share what I now know about VP so that other women in the same boat get some facts

    To anyone who happens upon this post while searching for reassurance I found comfort in the following facts available from the following really great articles

    http://www.pregnancybliss.com/vasaprevia.html
    http://www.gynae.eu/specialists/obst...a-praevia.html
    • VP is an uncommon condition where blood vessels in the umbilical cord develop a separate route away from the cord and placenta itself and are found just above the cervicle opening
    • In MOST cases, there is no problem with this aberrent vessel until labour starts (you won't be allowed to go into a natural labour if they know about it so it's far better to know!)
    • Risk factors for VP - IVF, a low lying placenta, an extra placental lobe, previous uterine surgeries, multiple pregnancies.
    • the incidence of VP after IVF is 1:202 compared to 1:2200 in non IVF pregnancies
    • knowing about VP antenatally is the best way to avoid fetal bleeding and death
    • of those women diagnosed with VP antenatally, the risk of fetal death is only 3% compared to 66% in those who didn't know they had VP when they went into labour.
    Most importantly:
    • As in my case, no ultrasonographer should be making the sweeping statement that a VP exists at a 20 week scan!!! It's far too early to tell. Remember that alot of placentas move a long way between 20-30 weeks and in about 10% of cases, the vessel (if it actually exists) can move upward with the placenta
    • some cases of VP are mis-diagnosed and are not present at later scans
    So my advise is to try not to panic!!!!! I know its really REALLY hard. Just follow the advise of your O&G - rest up, don't have sex of have internal US's keep exercise gentle and seek urgent attention if you have any bleeding. Beyond that just hang on, and pray, until your next scan.

    Hope this helps

    Amie x

  2. #2
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    Default More information on VP

    Hi Amie

    Congratulations on your pregnancy - you have gone to such extraordinary lengths for this baby I am glad that things have settled down for you a bit now.

    I just wanted to provide some more information on vasa praevia and address a couple of the points you made, in case there are others seeking extra information.

    I am one of the Directors of the International Vasa Previa Foundation, a not-for-profit international organisation dedicated to educating the medical community about the detection and management of VP as well as providing support and advocacy for families affected by the condition. We provide this service worldwide and have some of the leading experts on VP on our Medical Advisory Board. Lobbying from members of our organisation has resulted in guidelines for VP being published by the relevant professional O&G colleges in Canada and the UK. I am still working on it with RANZCOG in Australia but they seem to think their Obs know enough about VP (our experience would suggest otherwise...).

    You have provided a really good summary of what VP is and the risk factors for it. I am glad you highlighted the increased risk in IVF/AF pregnancies because it is much higher and isn't screened for universally.

    I am concerned though about your statement regarding detection at 20 weeks being too early. This is the recommended time for detection and for many women it is the only scan they will have during their pregnancy. I understand your point that it has created anxiety for you when the diagnosis may have been false, however I can assure you that grieving for a stillborn baby because your diagnosis was missed is far, far worse.

    Detection rates for VP have been slowly rising purely for the reason that sonographers are starting to look for it, despite the fact that it is not part of the 20 week scan protocol. There are lots of women who have a low-lying placenta detected at the 20 week scan and are then followed up with a 3rd trimester scan to check whether the placenta has "moved" higher up to allow vaginal delivery - many of those are cleared of placenta praevia but are not checked for velamentous vessels that may have developed as the placenta remodelled. Despite multiple scans many of these women have VP and are not diagnosed because the sonographers do not recognise the risk factors. Imagine having had repeated scans throughout your pregnancy, being told you are fine to deliver your baby and then losing your baby at 40 weeks because you weren't checked for VP. It has taken the IVPF more than a decade to improve the detection of VP by encouraging sonographers and Obs to look for it at the optimal time for detection - at the 20 weeks scan - and I would be devastated if this stopped happening because of the risk of false positives. VP rarely resolves or goes away. If your vessels have moved far enough away from your cervix to enable vaginal delivery then you are extremely lucky and also very rare. Remembering that the cervix has to dilate to 10cm and the baby's presenting parts can push on an area much larger than this when engaged, the vessels have to be a significant distance away to avoid compression or rupture. It just doesn't happen very often (certainly not in 10% of cases as you suggest) and it can provide false hope to others to have them believe this will happen to them. While the study by Lee et al. (2000) (that I assume you are getting that figure from) found that 3/18 of their cases had the vessels move, this has not been replicated in any other study. They also state that there is continuing danger to the baby even if the vessels have cleared the os. We see more cases of Type II VP (that with bilobed/succenturiate lobed placentas) "resolving" than we do those with a velamentous insertion. Unfortunately we also see quite a few cases where women were told their VP had gone or resolved and they were told they could have a natural delivery or even a late CS and then their VP ruptured and they lost their babies. VP becomes much harder to visualise as the pregnancy progresses and in the third trimester it can seem to have disappeared when in fact it is still there.

    I am not trying to scare you Amie, and your scan may indeed be correct and your velamentous vessels may have moved away from the cervix or your original diagnosis may have been wrong. But this does not mean the diagnosis of VP should not be made at 20 weeks. I agree with you that women should not panic when they get the diagnosis, as prenatal diagnosis and appropriate management results in nearly 100% survival rate (as opposed to a mortality rate of >70% when undiagnosed). The key here is antenatal diagnosis AND correct management. Unfortunately many Obs in Australia and overseas do not know enough about VP and treat it like placenta praevia. As it is so relatively rare, many may not have seen it during their career or perhaps only once or twice. There are still some Obs practicing out there who deny it can even be diagnoses antenatally and that deaths from VP are inevitable. I have met some of them myself! We know this is incorrect, the evidence is overwhelming that it can be detected as early as 12 weeks, readily detected at 20 weeks and with early hospitalisation and CS at 35-36 weeks there is close to a 100% survival rate.

    It is hard not to panic when you read what is out there. That is why the IVPF provides information from both our website and our Yahoo email forum that is based on the published literature and why we continue to educate the medical community about VP. If anyone is looking for support or information on VP our address is http://ivpf.org/.

    Good luck with the rest of your pregnancy Amie and I hope it all goes well.

    Regards

    Natasha Donnolley
    Director
    International Vasa Previa Foundation
    It only takes a moment to diagnose life...

  3. The Following 2 Users Say Thank You to IVPFTash For This Useful Post:

    KandP  (31-01-2013),wannawannabe  (23-04-2013)

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    Just bumping this up, I've just had my 20wk scan and it suggested I had vasa previa. I'm concerned with the recommended suggested care of a follow up scan at week 32 and want to hear from others?

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    Thankyou Natasha for sharing your info. I am 20 weeks tomorrow and just found out I have vasa previa. I am so glad that it has been picked up early and this baby will now have a fighting chance. Like most mums I am still scared to death and very attentive to my body now. I previously had two vaginal deliveries so the idea of this complication, possible cardio vascular heart problem, a c section, and a prem baby is overwhelming. However I'd like to thankyou for your factual comments as it has put my mind to rest a little. There really isn't a lot of information out there. But there is little you can do about it but rest and stay positive.

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    Kendelldea where abouts are you based?

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    Hi there,

    I started this thread many many months ago and it is so wierd to now have it active once again. I am excitedly pregnant again with my second American IVF donor baby from the same cycle as my son and am currently 20 weeks pregnant again and have just gone for my scan which thankfully this time around, shows no evidence of a vasa previa. I still remember those 10 weeks after finding out I had VP with my first and how stressful they were. Incidently I went on to have a normal vaginal delivery with my son and had 2 more scans at 32 and 38 weeks to confirm that there was no VP. I went to a high risk US clinic after having my VP diagnosed at a regular centre and they confirmed that the ultrasonographer was actually looking at the cord which was lying over the cervix at 20 weeks and thats how she came to the VP diagnosis.

    I am so grateful that it was picked up even though it caused alot of worry and that it eventually was human error. I'd still prefer to know and have it proven wrong than not know. Incidentally the same ultrasonographer also missed that my son had 2 developmental abnormalities - an extra thumb on his L hand and a dermoid cyst on his nose so I guess, like all things in medicine, its not an exact science.

    All I can say is try and stay calm. I know that the concept of having to have an earlier than normal delivery and giving up the idea of a NVD is devestating but holding a healthy happy baby is the only thing that really matters. I wish you both all the very best and let me know how it goes. Fingers crossed for you.

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    Hi Amie,

    Congrats on the birth or your boy and congrats again on your current pregnancy!

    Fingers crossed we too have the wrong diagnosis!

  9. #8
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    We had a diagnosis of VP on our 20 week scan, in conjunction with a succenturiate placenta. We have a follow up scan at 32 weeks (we are currently 27 weeks) but from the scans in the OB office, it looks like it will not be resolving before birth.... I had started another topic at the time, as this one had been inactive, so it is great to see an update :-)

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    Zabella

    Where abouts are you? Was a rescan at 32 wks your only management advice given??

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    Congrats Amie on your first arrival and your second pregnancy. I hope things go smoothly for you

    Hi Chances
    We are in Melbourne....
    We see an OB at Northpark, and he is really good. Other than he rescan, I have been booked in at the local public hospital, The Mercy, as it has an excellent reputation and a level 1 SCBU if we end up having a premie (we were originally booked at the private hospital) and I have restrictions on lifting, and no sex and a few other things. Any bleeding I have to go to the Mercy as an emergency and they will call the OB. I hve just been trying not to worry too much about it and see what happens at the 32 week scan. Easier said than done sometimes. We haven't really told anyone, because i dont need to cope with other peoples anxieties as well as my own. We are expecting a c section at 35 weeks at this stage. Hopefully all will go well until then
    How about you? What kind of advice have you been given? Do you know much about how yours developed? Ours is Type II from bilobate/succenturiate placenta, apparently it is a little more common with IVF. Did ypu have any bleeding in the first trimester?? I did from about 5.5 weeks to about 8 weeks... I wonder if it was related? So many questions! Hope you are doing well, try not to worry too much!


 

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