Placenta previa/vasa previa/succenturiate lobe - support needed.

[thegoldenlemon]

Bit long but could really do with support from mn with this one. I'm 26 weeks and 2 days pregnant and a week ago was rushed to hospital with a huge bleed and spent five days there while it settled. They were prepping me for delivery on Friday as I had tightenings every three minutes but then it all calmed down.

This is a four year in the making ivf pregnancy so my nerves were already rather fraught. I found the bleed terrifying as I thought I'd lost the baby til he did a huge kick when the ambulance went over a bump. I knew my placenta was low lying but an internal scan revealed it has moved down, I have a smaller extra lobe now sat over the os attached by a thin band to the main placenta. Currently the band is not over the cervix. However, I'm back in next weds to check for vasa previa as ivf and extra lobes are risk factors and they want a close look. Looking up vasa previa (read googling it like an insane woman at midnight on a lonely ward) has terrified me. I'm now scared of more bleeds (which I've been told to expect, to have bag packed, phone charged, stay within major hospital reach etc) but mostly that I could lose this baby. If it is vasa previa they said I would probably be admitted and delivered at 34-35 weeks with a seven week stint on the ward. Another bleed and they'll also keep me in.

Any help or experience with any of these things and generally a hand hold til my scan next weds would be gratefully received.

[AbbeyRoadCrossing]

I had placenta praevia in my last pregnancy but no knowledge of the other two I'm afraid. The bleeds are very scary but good news it has stopped. I managed to get to 36+1 with mine. It was a crash section but DS and I are fine now.
Wishing you get much further on in the pregnancy and all the best for the scan

[thegoldenlemon]

Thanks Abby. Did you have a prolonged hospital stay? I've been told to prepare for this so actually packed my bag today. Interested to hear from anyone who did a long stint on the ward. After five days I did start to get used to it but can't imagine being there for weeks. Found my ventouse especially painful and in the way. Glad to hear all was well. I literally am counting the hours and days now to grow him bigger.

[AbbeyRoadCrossing]

We were in for 8 days, mainly due to DS having feeding issues and losing a lot of weight. I was told with premature babies that staying until somewhere between 37 weeks and due date is typical though.
I think if we hadn't had that I'd have been in maybe 2 days as I was having blood transfusions. I was also in for a couple of days beforehand with the bleeding.
Postnatal ward wasn't great but they did feel sorry for me and move me to private room after a few days

[AbbeyRoadCrossing]

And my bags are packed this time even though I don't have it again! I packed at about 24 weeks and everyone thinks I'm weird...

[thegoldenlemon]

My bags are packed today! They've told me it would be potentially a long term admission if I bleed again (or have vasa previa) did you manage to avoid that? I'm signed off now from work and have been told to be very inactive so walking around gingerly. Starting to sink in what this means with regards to all the third trimester things I can't do now. But it's all small fry in the bigger picture.

[AbbeyRoadCrossing]

Yeah I was pretty lucky. I had small bleeds early on but then nothing until 35 weeks when I had the EMCS a few days later. They actually thought mine was fine at the 32 week scan so I was pretty relaxed about it, still at work, lifting things etc...

There was a woman on here recently that had bleeds in the 20 weeks time and she made it to term so you never know. It seems to be quite unpredictable either way

[Skiptonlass]

I too have a low lying placenta and foetal vessels too close to the os. 35 weeks now. I don't have full Previa but it's very close indeed. I'm still at home and I've had no major bleeds. Scheduled for section at 38 weeks with strict instructions never to be alone and to take it very easy.

It is really frightening when you start to read up - I'm a scientist with quite a bit of clinical knowledge so I'm able to sort the wheat from the chaff internet info-wise but I've banned myself from looking. It's just too scary. One thing I did read though was that if they catch vasa Previa pre delivery and can do a c section, you have a97-100% chance of the baby being ok. It's when they don't catch it before delivery you get all the issues.

I'm signed off too - it's really hard to be inactive but you must, must, must follow orders. If they want to bring you in, then alas you're just going to have to do it - I'm putting an easy but massive knitting project in my hospital bag along with a few dozen new books on my kindle!

Good luck to you - the lack of control and potential seriousness of this is really hard to deal with. Take it as easy as you can possibly can and if you feel anything out of the ordinary call the hospital!

[thegoldenlemon]

Thanks Skipton, it is very frightening when you read about it. Not sure where the vessels are with me so will feel more in the know next week and can start to understand what we are facing. Do you need to go in ahead of the section?

[Skiptonlass]

Not so far. I'm booked in for a section at 38 weeks, so they can't be horrifically concerned about it...(I hope.) I think if you have full vasa Previa they do it at 35 weeks. Mine is just 'too close' . (The appointment was in a language I'm still getting to grips with and I was a bit stunned as well. I should have questioned them more...)

I just have to go in for the usual pre op appoinment I've had no bleeds and my cervix is still tipped back, closed and a good length (long may it stay that way.)

I'm not allowed to leave the area, be alone or without my phone and I have to come in immediately if I have any sign at all of impending labour. It's nerve wracking, but I'm trying to just relax as much as I can and rest... If I'm honest, I'm in a bit of a denial state... If I think about it I get very upset so I'm trying not to think about it.

They should have a better idea of the lie of the land after they've examined you next week. I had a very thorough internal ultrasound with the two consultants where they looked in detail where everything was. They said they'd need to plan the section thoroughly but that it should be ok.

From what I understand, the catastrophic situations arise when this isn't picked up before labour. They have caught it, so it should be managed.

Thank goodness we live in first world countries.....

[thegoldenlemon]

I am in the same lockdown situation and so scared of early labour. Sometimes I have to be on my own and I get very nervous then. My bleed was so horrible I really hope you get through without one. I'm hoping my cons is at the scan next week, I'm not sure what the plan is there though I know I'm seeing her straight afterwards. Must have been hard in another language. I think I'm going to end up in the same grey area of vessels being very close. I feel like I'm on a tightrope. I think if it's all very grey area and borderline I'm going to ask to be admitted early as at least I'm in the safest place and having being told I'm almost certain to have another bleed I feel quite unsafe at home albeit a lot more comfortable in the food/bed/creature comforts stake.

I'm aware this could also be dangerous for me but have mostly been focused on getting the baby here safely. In terms of your section being planned carefully do you know what they were referring to? Position of vessels? Hope you don't mind me asking questions.

[Skiptonlass]

I'm assuming position of vessels and placenta - which is anterior... The impression I got was that they needed to be sure they were going in at the right place? Just so they don't cut through anything they shouldn't... Or maybe they plan any slightly more complex section? I'm not sure.

Good luck to you (and you too abbey, I hope you have the worlds most uneventful and straightforward rest of pregnancy and birth!) Feel free to PM me and I will let you know how mine goes in a few weeks :)

[AbbeyRoadCrossing]

I think they have to be a lot more careful with anterior because they don't want to cut through it if they can avoid it. With posterior there's nothing in the way, as it were.

I hope it goes well for you both. The good thing is they know about it and will look after you. It seems t??be the undiagnosed ones that are tricky.

Unfortunately I'm having another complicated pregnancy due to the blood transfusions last time I've got antibodies. But it is what it is, another pregnancy and birth out of my control

[thegoldenlemon]

I will keep in touch as this is such a scary thing to go through and moral support is something I really need at the moment. Dh has had to go out tonight and I am sat in bed with all the lights on feeling like I just watched a terrifying film Abby its rotten that pregnancy can feel so very out of control. We are doing the very best we can though.

[SmallestInTheClass]

I had this, nearly four years ago, with my second DD. The first thing to note is the placenta praevia and vasa praevia are different things. Placenta praevia is when the placenta covers the opening, mostly just means that you need to have a section and is not generally high risk for baby. Most people are fine at home and just need to go in if they show signs of labour or bleeding.
Vasa praevia is different but is usually found with placenta praevia. Vasa praevia is when the baby's blood vessels are over the opening and are not protected by the placenta, so it's much more risky for the baby and can also be risky for the mother in terms of bleeding, but only if you go into natural labour. I had vasa praevia, diagnosed at 33 weeks after some very minimal bleeding early in pregnancy. I was being monitored for low placenta and went for a scan at 33 weeks to check if the placenta had moved enough for me to have a natural delivery and to my surprise diagnosed the vasa praevia. I was sent straight to hospital and was told that i would need to stay in until the baby was born. They basically said that if I went into labour naturally, the blood vessels would burst and the baby would have minutes to get help and I might need a transfusion. Scary, but it's great they have the technology to diagnose it and there is almost no risk if you are diagnosed and kept in hospital. I had three very boring weeks in hospital, worried out of my mind, and was booked for a section at 37 weeks. DD had other ideas and I started showing signs of labour a few days before that. I was in hospital so was taken down to theatre and given an section My DD was born within 30 mins of me calling the midwife to say I thought I was in labour! All a bit scary, but the good news is she was fine, came out screaming and healthy. No need for blood transfusion for me or her, we were both fine. They kept my placenta to show the student doctors as it's quite rare! I think about 1 in 3000 births, so they would only get one a year on average at my hospital. The staff were amazing and I owe my daughter's life to the lady who did the scan and spotted that the vasa praevia was there. Now my DD is a healthy, happy three year old who has just started nursery school! Good luck and know that you can get through this!

[thegoldenlemon]

Thank you so much smallest for sharing. I am so glad your daughter is ok and that it is all in the past for you! If I hadn't had the bleed, the extra lobe and then question mark about vasa previa would not have been picked up. I've had to be firm about being scanned for it as was told it was rare and not to worry but indeed the consultant, to her surprise, did find vasa previa and I am admitted long term and after being here eight days I have had another small bleed so I feel like I am very much in the right place. It feels very scary having this diagnosis but I am so glad I know it's there. I have a new thread now on long term hospital stays if you want to see how it pans out, wish us luck.

[Pughnichi]

Hi all

I have been reading this with intrigue! thegoldenlemon how did you get on? Are you still in hospital, has your baby been born?

I have just had my 20week scan and also have a second lobe. Large on at the back and smaller one at the front - I have been told I will be rescanned at 32 weeks to see if the membrane covering my cervix opening has blood vessels in it but the likely hood is I will need a c-section #gutted. They haven't said anything to me about vasa previa but that I need to head straight to hospital if I have a bleed. Been googling it and its hard not to fear the worst (esp after already having 1 miscarriage)... 32 weeks seems like such a long time away and now i'm thinking perhaps I should be taking it easy just in case! Do you think I should not swim, yoga etc now. How active were you before you had your bleed? Surely they would have said this to me if they were concerned at all!

Anyway best of luck with your pregnancy, whatever stage you are in now?!!!

xx

[Skiptonlass]

Hi pughnichi,

I was told to take it easy - no housework, nothing vigorous. I also had bad spd so I wasn't exactly active..

Anyway, it all went ok. I had a section (few issues re that, but nothing caused by the previas.) the surgical team did an amazing job, I only lost just over a litre of blood even though the placenta was anterior.
I was a bit of a wreck the first couple of days (it is major surgery) but I was very well looked after and I seem to be healing ok. Was walking to the sink in a few hours and home after four days.

I'm about 18 days post section and actually feeling better than I did when I was pregnant.

My son needed a bit of extra monitoring after birth and so did I, but he's currently on my lap guzzling milk and perfectly healthy.

I am profoundly grateful I live in a country where this was picked up and dealt with.

Just make sure you keep an eye on yourself - any bleeding or signs of early labour get yourself to hospital and don't overdo it with activity.

Good luck! I was incredibly nervous the last couple of months but it's all worked out ok :)

[Pughnichi]

Oh Wow, thank you to you both! It is scary to think that a bleed could mean months in hospital but I am just so relieved to hear you are both doing well and more importantly your babies have arrived and are now safe and well!

I wasn't sure if I was being overly cautious but you have both made me realise it is probably better that I don't over do things now - it's just not worth it.

I have started to take my maternity notes everywhere with me now and I vow to put a hospital bag together by the time xmas comes. I am fortunate to work in the hospital I am having my baby at, so at least if I do bleed I am already in the best place possible.

Congratulations to you both, I am just a little bit envious you have your babies in your arms, enjoy them, and keep those feet up for as long as possible xxxxxx

[thegoldenlemon]

Pughnici doing a bit of a catch up on the threads I started. I have now been in hospital for 6 weeks. It's been tough and I've had 4 bleeds since being in here so it was the right decision for me. It's good that you work at the hospital, that must be reassuring. How are you feeling about the wait between scans? Are you in the uk? And is the lobe over the cervix? If not, then it seems a lot less likely you'd have a bleed I think.

Vasa previa is a scary thing to read about. But, I'm very glad I did. The connecting vessels between the lobes can be the problem bit and I don't know about your situation and I definitely don't want to add worry but a natural birth with potential vasa previa is not recommended, there is useful info on the uk royal college of obstetrics about this. It might be a plan to gather your questions to ask and maybe press for a scan inbetween as that does seem a long time to wait. I'm 33 weeks tomorrow and aiming for a 36 week section. Good luck and do ask if you have more questions, I've read a lot about these bloody lobes!!!

[thegoldenlemon]

Oh and my bleeds have generally happened when I'm still. However, two of them have had direct likely causes, once after I sneezed and another when the baby did its biggest ever move and flipped himself. However, my placental lobe covers the entire cervix. I was told after my first bleed that more bleeding was a pretty much given and they were right. If you don't have placenta previa I'm sure gentle exercise would still be ok, but I'd really try and take it easy if you can.

[thegoldenlemon]

Oh and one more thing - pack a bag! I'd advise anyone to have some stuff out aside after 25 weeks but this is a result of my experience. Partners can do pretty well at finding the things you need but toiletries/underwear/pads can prove to be elusive and mysterious to mine. We got there in the end though

[Pughnichi]

Thanks thegoldenlemon your post is timely as I have just rang the midwife to ask about exercise and sat at work thinking about it!!

MW has told me no to sex but gentle swimming should be OK - although I may well still leave it be.. (I have a slipped disc in my back, which is OK for now but worried that when I get bigger it will get worse esp with no exercise/stretching!)

She has booked me in for a 28 weeks scan to determine if there are any blood vessels in the way or not - my smaller lobe was 'encroaching' on the cervix with the membranes stretched across it and I think I am lucky that the umbilical cord is coming out of the larger lobe and not the membranes in the middle - is that what you have? Have they have given you something to stop the baby coming early?

28 weeks still feels like an awful long time away (am 21w now) just wish I knew the severity of my situation or if I can breathe a little easier!

I can't get over the fact you have been in hospital for 6weeks, with another 3 to go!!! It's crazy when you think of it really, but it must be some relief for you after your 1st big bleed and the fact you have been through IVF too - you must be in a constant state of fear, stress and happiness all at the same time? But you have come this far and not long to go now - keep holding on for meeting your baby (but not too soon !) Do you know what you are having?

What do you get up to an an average day on a ward and are you on there with other 'lifers' or are they coming and going?

Best of luck to you xxxxxx

p.s Thanks for the advice.. I will def start to pull a bag together otherwise if will be the blind leading the blind if I have to get my husband to do it from the hospital bed!

[thegoldenlemon]

Hi pughnici. Yes, 6 weeks is mind boggling and I have had some low points! I have had to make myself quite a routine to make time here manageable. I get up fairly early to be dressed for ward round, I don't wear pyjamas all day, I make my bed more like a sofa with a different blanket in the daytime and all to ensure there is a clear distinction between night and day. I have done various craft projects, I'm enrolled on an online course at Future Learn, I read a lot and have boxsets. I go off ward for about an hour a day with a wheelchair in case I need whizzing back. I don't eat any of the food and am very lucky that dh is sorting all my meals out. I go to bed early. I have a good cry of insanity about once a week.

The cord is attached to my main placenta and the lobe slowly crept over the whole cervix after 24 weeks. The 'communicating' vessels are my problem. They are not protected in the way they usually would be and therefore at risk of rupturing were I to go into labour meaning the baby could bleed to death very quickly. So yes, it is terribly anxiety provoking and I feel like I'm clinging on to the edge of a cliff. I can only hope I make it to a planned section.

I bet time will feel quite slow for you now. Keep asking questions you have. I have found that vasa previa is pretty rare and it's helped me to read up as much as I can about it to be empowered when talking to the very many consultants and midwives I've seen. The danger with that is that reading about it is also terrifying!

And yes, I'd really take it easy. Keep in touch and ask away if that's helpful. I am having a boy who is currently kicking my ribs and oblivious to the drama!