Feel bad - need to decide what to do.

[Lalla525]

Posting here mainly for the traffic, need a hand to decide what to do.

Here's the story. 32w pregnant with vasa praevia. Vasa praevia is a condition due to which fetus's uncovered blood vessels (which are generally safely enclosed into the cord) are outside the cord and close or over the birth canal. No problem, until membrane break during labour. If they do, baby dies due to blood loss. For undiagnosed cases (the majority) the stillbirth rate is 60-90%. When diagnosed, the protocol is to admit the mother between 30-32 weeks and schedule a c-section between 34-36 weeks (this is to be close to theatre is case of premature labour and the early birth at 34-36 weeks is to balance risks of prematurity with risks of spontaneous labour).

I came to the hospital at 31w3d (4 days ago) because of some contractions and some period pain. They let me stay the night for monitoring. Thankfully, contractions seem to be only braxton hicks and period pains went away. They did some test to check how likely it is that I will go into labour in the next 2 weeks and it came out that the probability is very small (2%).

Since then, doctors keep asking me if I want to go home. I feel like they (and the midwives) think I'm being overly cautious and should really move on and free up the bed (not occupy it for the next 4 weeks). In the report yesterday the dr mentioned "we did all tests but she is not reassured enough and she has decided she will stay here until delivery". Today I have also been informed that midviwes are talking about my presence here and that if the bed is needed, dr might re-assess my stay.

I feel absolutely fine physically and the thing with this condition is that it is not a problem, until it is. So I seem healthy and good while other women here are struggling, and it feels like, according to the experts, I should just go home.

However, guidelines and my fear tell me that I should ignore everything and stay here. Worst case scenario they'll think I'm paranoid, but at least baby will be safe. However, 4 weeks of being pushed away feel very bad.

What do you think?

do you have a partner or someone else who visits you, that you trust? I'd ask to schedule a meeting with that person to support you, and the midwife/doctor etc and put all cards on the table. Personally, I'd be pushing to stay if you feel safe there.

I’d stay where you are. It’s not worth the risk.

I would 100% be staying at the hospital. The one hour drive absolutely solidifies the opinion that you're doing the right thing. This is the life of your baby, and your own. I would much prefer to be awkward for a month than the possible alternative.

If any of the nurses etc mention that the midwives are commenting I would be very succinctly saying: "Making such comments to me is not helpful in any way. Kindly keep these things to yourself. I am here because my condition warrants it. I do not want to discuss it further OR hear the ward gossip."

I would be a bit more robust with them. Tell them the guidelines are clear and you are not comfortable with being an hour away from hospital. Then say that constantly questioning your decision to stay is causing you unnecessary stress when you are already worried.

Definitely stay where you are.

I was pressured into being discharged too early (the one supportive midwife was off duty) so I know how you can be made to feel unwelcome by the staff, but you really have to stick it out for the sake of saving your child's life.

I wouldn’t want to be an hour away from hospital in your position, but I’m not sure that you should be staying in hospital when you don’t need to be there.

You need to be close to the hospital, not actually in the hospital, so could you book a hotel a bit nearer and stay there? I realise it might be expensive, but it’s expensive for the nhs too, and this should be your bill, not theirs.

Stay stay stay.

Yes I second what @ChazsBrilliantAttitude days. They shouldn’t be making you feel this way. Ask them how they would respond in court if your baby dies and they are asked to justify encouraging you to leave. Write down every last comment between you and medical staff. Good luck

I would stay as well.

However, from the point of view of a medic (Not this speciality at all so not going to give an opinion on risks etc) is it possible you're reading more into this that is there? We are taught patient-centred medicine these days and the truth is that the vast majority of patients (even pre Covid) are keen to get out asap and are disappointed when we recommend they stay for whatever reason. We are duty bound to tell the truth and if I have a patient who in my opinion would benefit from a longer stay, I also do tell them about the risks or otherwise of going home so they can make their own informed choice. Is it possible that's whats going on here? Your OP says doctors keep asking me if I want to go home (note asking) and I feel like they (and the midwives) think I'm being overly cautious and should really move on and free up the bed (not occupy it for the next 4 weeks) (Communication is not always great I would be the first to admit that but you say this is how you feel rather than what's been said?) and In the report yesterday the dr mentioned "we did all tests but she is not reassured enough and she has decided she will stay here until delivery" This is just a factual statement (and good documentation) so I would feel judged by this at all. I write similar things all the time and I'm not judging e.g. " I discussed the reasons for the feeding tube with the patient but she is not keen and therefore we will continue to try without it".

I think the use of they say it is my choice should guide you - there are occasionally people who really should go but don't want to and we don't say things like that in those circumstances. I would try not to feel pressured and just consider that you've been given options and you will do what is right for you. Best of luck with your delivery and new baby.

@NailsNeedDoing I realise it might be expensive, but it’s expensive for the nhs too, and this should be your bill, not theirs.

What a load of sh*t! What a ridiculous comment, really annoyed me!
This is why we pay taxes!! She's not in for a free boob job FFS, she is in because she a very serious medical condition which could be traumatic and fatal for all involved. This is exactly why we should all treasure the NHS; so that people who need it can use it, and the OP certainly needs it!

Absolutely stay in. 2% is not a small risk when it comes to a drastic consequence.

2% probability means 2 women in 100 will go into labour. It sounds like if you were in that 2 your baby would likely not survive, given the distance from hospital.

If you had an older child (I don’t know if you do) and the school asked your permission for them to participate in an activity, and the school added, “by the way, we have calculated that this will probably kill 2 out of every 100 kids in the school“, I don’t think you would be signing that permission slip.

@NailsNeedDoing

Hotels are shut, and so are airbnb, and other accommodations - so that's not really an option.

Furthermore, not sure I agree with your stance on "it should be my bill". I pay an NHS bill (in the form of my taxes) every year.

My waters broke in the middle of the night with no warning. I was then left too long in my opinion before giving birth (not the point) but my point is, your waters could break early and then you have a 1 hour drive to the hospital. You say it would be a matter of minutes before your baby could be in trouble after this point so I think you should stay in hospital. Nobody knows if or when their waters will break and you don't want to risk it. If you feel like staying in hospital is the right thing, then definitely do it. From your post, you say you should be admitted at 32 weeks, and you are 32 weeks!

You poor thing. I would definitely stay, your baby’s life could depend on it (and yours too by the sounds of it). You live too far away from the hospital to risk it imo. Hope all goes well for you.

In the situation you describe I wouldn't want to be one hour away from the hospital if the waters break.

I'd stay put to protect the baby rather than risk a lifetime of "if only" regrets.

I really can’t understand why they are giving you this impression. You MUST stay where you are. I had vasa praevia with my first child. I was admitted at 32 weeks and I wasn’t even allowed to leave the ward for the first week I was there! I stayed until a c section at 37 weeks and I was given a room after the first few days as I was a long stay patient. After the first week, I was allowed to go into other parts of the hospital for a walk, but only if I had a chaperone and took my notes with me. I’m so sorry you are being given this impression. Please stay. Your baby is very likely to die if you do go into spontaneous labour away from this setting. Vasa praevia is very serious, But if managed correctly, your baby can have a normal c section birth and be very healthy. My baby was fine, and is currently eating toast, sitting on the sofa watching a film!

@Seventytwoseventythree

You might be right. I don't know. I tend to interpret the British "feel free to go home" as "you overstayed your welcome". And "I suggest x but it's your choice" as "you should really do x". But maybe I'm overthinking this.

It's just that I was not expecting this. Protocol is clear and risks are high, so I thought that, after 4 days and repeatedly stating my stance of wanting to remain in until birth, that it would be out of order to just keep asking and keep returning on the subject. Just that, really. First time they ask, it did not bother me. 10th time, I am starting to worry they are going to kick me out soon.

Stay in. I had a placenta praevia and was 10 minutes from the hospital. Those 10 minutes feel a lifetime when you’re having a bleed let alone with vasa praevia!

but it’s expensive for the nhs too, and this should be your bill, not theirs

Oh fuck off with that shit.

The op not being in hospital means there is a very very real risk that if her water spontaneously break, her baby will die. She hasn’t gone in because she fancies a little holiday or a boob job.

@Lalla525

Yes I completely understand. Are you seeing the same team every day? Just wondering if each days team are aware that the options have already been provided to you. I think it’s difficult both ways as I have many times had patients who are fine with staying until they just hit a wall one day and then change their mind so it’s not unusual. I think it would be reasonable to state clearly that you appreciate they’ve given you the risks either way and you’ve made your choice to stay in hospital, you’re feeling pressured by keeping discussing it and please could you leave it that you will let them know if you change your mind or want to speak further? If you were my patient I would be horrified I had made you feel like that and would respond to this request with “I’m so sorry we made you feel pressured. Sit tight and let us know if you want to talk any more” (however I would note that you may have to say this multiple times to different team members as pages get written in the notes every day and sometimes something documented a few days ago is far enough back that it’s not read). I think it’s also perfectly reasonable to raise the guidelines with them if you come against any resistance but I would hope that wouldn’t be the case.

I can't actually believe someone suggested an AirBnB or hotel as if these haven't been SHUT for TWO MONTHS. Jesus.

I would stay put and tell them to stop hinting; you're not too stupid to pick up hints but are choosing to ignore them.

Stay put. DO NOT LEAVE.

If they keep pressuring you, ask them to put on your notes that you want to stay in the hospital for monitoring, that. 'Patient wishes to remain in hospital's
Talk to the doctor and ask them to reconfirm on your notes that you are staying in the hospital until the baby is delivered as recommended.

I had a nurse telling me that I would be charged for the room if I did not go home, because I had been in labour for several days. The baby was only a few hours old at this stage.

The next nurse said the same. Then throughout the day, I thought they were actually writing it on a board somewhere, because they kept repeating it.
Eventually I started packing up my things, and getting ready to go home.
My gynacologist called in and said 'stay here and rest for the next few days, that was a long labour' and i told her what the nurses had been saying.

She said the was totally NOT true about having to pay.
They just wanted rid of me because I was fine. Looking back at the photos though, I was shattered. They just didnt want the hassle.

Do not be bullied.

If I was you I wouldn't be going anywhere.
Stay put.
Wishing you all the luck in the world.

I am a healthcare worker and I wouldn't be judging you at all for staying in if I was caring for you. Don't feel bad OP
All the best :)

Stay. Please stay put.