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?

Tell the nurses or whoever to ''shut up''

1 hour drive. Can't drive faster. And we are talking about 5/10 minutes margin between rupture and death.

Given how far you are from the hospital and how fast you'd need to get there, I think you should stay put. Just be very nice to the nurses!

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.

Are you suggesting the midwives said the doctor would kick you out because of a shortage of beds?

Really?

Please stay. My first was breech and my waters went at 38weeks unexpectedly. Luckily we rushed to hospital and then they found out I had vasa previa during the c-section which happened immediately as I was labouring really quickly. I still feel sick when I think about what could've happened and I'm so incredibly lucky that everything turned out ok. If guidelines say stay I would push to stay. If it helps just remember that although the midwives and nurses are amazing they don't 'know' you so even if it feels funny it's nothing personal. You need to do what feels right for you and the baby.

@MintyMabel

The words were more or less the following "it is ok now for you to stay, as the ward is half empty anyway. But this is not common and if many urgent cases arrive, then the dr will need to reassess priorities and decide who to keep"

Given your baby is at risk within ten minutes of your waters breaking, it seems unlikely there would be many priorities over that.

Standard practice would be to send new cases to another hospital.

How assertive are you? Have it out with them - not in a shouty rant way but in a factual way. You can’t do much more than that really.

And the outcome - stay put, absolutely not worth the risk.

I am a midwife and if I had your condition I would most definitely not be going anywhere, especially if I lived 1 hour from the hospital.

I have seen many women stay in long term who are much less risk than you are and we have never had an issue with it.

In my hospital you would more than likely not be next to the theatres as these are the delivery rooms but it takes around 2 minutes to get there in an emergency so not far! But would take longer for the obstetrician to scrub for the caesarean.

If you continue to hear midwives talk about you please go and speak to PALS. They should be supporting you and not making you feel this way.

You need to advocate for yourself and for your baby if they won't do it and try and talk to them about your fears as it isn't fair on you.

I would stay. This is your baby and you need to protect her/ him.

Stay. There's no reason at all for you to go home. What's the earliest they could do a planned c section?

@Seventytwoseventythree

I see a team every day. Drs are pretty much the same but the consultant (the one speaking) so far has been a different one every day. Midwives are always the same.

Can I ask a question? If you think a patient did not need hospital stay (but the patient said they wanted to stay in hospital) what would you tell them and would you discharge them even without their consent? What I'm trying to get to is: would you keep a patient without a medical reason, just because they have anxiety? I don't think this is my case considering the diagnosis, but would just like to understand what's the protocol for an unjustified stay.

@ChewChewIsMySpiritAnimal

They could do it at 34, but the consultant said that given the test results, we can wait 36 weeks and give baby more time to grow. Of course I am monitored in the meantime and if something changes (e.gm cervix shortens a lot) they would reassess and bring it forward.

I would stay.

I know it is unlikely for your waters to go at such an early gestation but when your waters do go it is often sudden, without warning and it is totally unstoppable. You can't risk being an hour away, if you only have 10 minutes to play with?

I totally understand your feelings but I agree with @Seventytwoseventythree that, in the gentlest way possible, your feelings are based on assumptions you are making about how the Docs/nurses feel rather than what they have specifically said ('I feel that', as opposed to 'the Dr told me that...').

We all do that all the time so it's a completely normal reaction often based on our own worries; in this case I imagine you don't want them to think you are over reacting and using a valuable bed because you're well. Try not to worry about what they may or may not think because in the end, who cares. As you say, worst case they think you're paranoid but the safety of your baby trumps that.

Personally, I would stay put and I'd have a frank conversation with the Dr saying that whilst I understood the probability of labour is relatively low in general, it is too high for me personally to risk my babies life on by going home.

If they do re-assess and say you must go home, I suggest you ask for it to be documented in your notes the specific reasons as to why it is now deemed 100% safe for you to leave after x days in hospital along with a statement making it clear you are leaving under duress because you believe your baby to be at risk based on previous advice given.

I would stay and I would tell the doctors why you wanted to stay.
I had an operation which had a risk of post op complications and was offered the option of going home earlier. I told them that I would rather stay due to the risks, but was happy to leave the next day.

Good luck.

I found this in the Royal College of Obstetrics and Gynaecology 2018 guidelines on this condition.

Basically says that evidence for hospitalisation from 32 weeks is weak and that outpatient monitoring has been associated with excellent outcomes. I am posting this because I suspect this is the information they are going by.

However, I think an hour away is too far. In your position, I would absolutely stay put. You will have to stick up for your child many times in her/his lifetime, and this is the first.

Risk a stillbirth which could have been prevented (even if a very low % risk), vs slightly annoy some medical staff but have a live, healthy baby?

I know what I would choose. All the best OP.

Just to say as well, I always say I have been “going into battle” for DS since before he was born. He came after infertility and praevia pregnancy is very hard. Stick to your guns

@LittleCabbage indeed. Hospitalisation is not a must (I think they changed guidelines relatively recently as people who gave birth years ago seemed to imply that at the time it was a must).

Might be a bit cynical here, but I suspect it is more the lack of funding (rather than strong convincing evidences) which changed the protocol to be optional.

If the hospitalisation was a must, they would not even dare to talk about sending me home... they are within their decisions domain

So sorry you are having to go through this.
Absolutely stay in hospital. I know it's awkward etc but as a PP said much better 4 weeks of awkward than the alternative.
Good luck OP. In a few weeks time this will be a distant memory x

Please stay in the hospital.

I'd stay put until they are at the point of physically ejecting you from the premises at which point I'd probably be tempted to say I was having pains or reduced movements. And if they made claims of having to charge, I'd say 'fine. Charge me.'

You're doing everything you can to ensure that you and the baby are in the safest place. You don't live five minutes away from the hospital. It's an hour at best/when you aren't risking there not being an ambulance available at all.

Bedblocking is a problem. But you aren't blocking out of selfishness (other than the bit about not, you know, wanting the pair of you to die horribly), you're there because there is a known extremely high risk pregnancy and you know that if something were to change, there is no hope of it being a happy ending.

Stay put OP. Stay put.

Who cares what the midwives are saying. You are following protocol and after your baby is born you never have to see any of them ever again!!

You are in the best place (despite the virus) and you have to think about the health of your baby.

I would firmly and politely tell them that you are staying put.

@Lalla525

That’s interesting about the changing team and I wonder if this is half the problem. The consultants do get pressure from hospital management to discharge where it’s appropriate so I wonder if they don’t realise how many times you’ve already had this conversation, or even if they do, they don’t know you so maybe don’t see how it’s affecting you. For what it’s worth I think you sound like a lovely and reasonable patient for even worrying about this at all (as discussed you have a solid medical reason to stay). If one of the other regular doctors (given that we change around a lot with shifts) looks sympathetic I would try and scout out their name badge and after the morning ward round ask the nurse if you could please speak to Dr X. I think this is the person to have the conversation with and to make it really clear how this is affecting you and you have made your mind up based on evidence, and you were told it was your choice but are now feeling pressurised and please could they ask their consultants not keep bringing it up. My hope would be that a friendly junior who knows the situation would then brief the incoming consultant (Who doesn’t) each day and it might get the number of conversations about this to decrease. At the end of the day if you need to keep reiterating that you’ve discussed it already, you know the risks and they said it was your choice and you’ve chosen to stay, then you’ll have to keep doing that.

@Lalla525

Regarding your question I think that’s a difficult one. I’ve never worked at a Trust with a protocol per say, except for people being aggressive or violent. I have worked in many teams and some of us are more hard core than others. I personally don’t push for a discharge if patient doesn’t want unless a) it was damaging to the long term plan eg. A care package that had taken us a month to get would be lost if they didn’t go, or b) it was damaging to their health eg. Drug seeking, or c) there were no beds and I really felt the patient would be fine at home but somebody waiting on a trolley would likely suffer badly without admission. In these scenarios I would talk it through with them and explain my reasoning, and as much as possible try and put in place other reassurances (book a GP or Outpatient clinic follow up, call them later in the week to check on them, make sure they had plenty of painkillers etc). Anxiety is a big player as you say but most people have very reasonable concerns and you can work with them to come up with an alternative plan. Often with health anxiety (not the issue here!) staying in is actually unhelpful as it reenforces the belief that the person is sick and needs hospital. Whereas if f they’re going to get better there need to be ways for them to function with it outside of hospital if you see what I mean. Sometimes we do have to discharge people without their consent even after all that but it’s not nice and I would consider it a failing if I couldn’t come to an agreement with them. These are often people who repeat this pattern of behaviour a lot though, and often psychiatry are involved too. I’ve never been in this position without someone like you who has genuine concern about her baby’s health and for good reason too. Contrary to what you read on MN most of us care more about our patients wellbeing than hospital targets and would take things like anxiety into account.