To want a clearer answer? Please be kind

[Refreshed]

I have posted this here for traffic, I'm hoping someone with more knowledge may see and have a higher chance of reading.

I've had several miscarriages but two later ones. My DD was born in October as a late miscarriage. Since my losses seem to get later and later, it makes sense to think about what will happen and what are our rights if another baby is born early but next time is extremely prem but viable. I asked my consultant if this is possible and she said yes, it's sensible to perhaps prepare for a prem birth next time.

I am now pregnant again and the question I have is quite simple but not easy to answer, it seems - Can I refuse resuscitation for my baby if they're born not breathing just after the viability threshold? And, if they are born at 23/24 weeks and they are breathing on their own, can I refuse help for them?

I'm aware that these questions may seem so so cold to somz people Please know it is from a place of love and also practicality.

I do worry a lot that I'll end up going into labour so prematurely again, but this time a little later on. The list of complications for that little person for the rest of its life worry me.

I work alongside midwives and I'm friends with a few. None of them will give me a straight answer, none of them are clear. I usually get a response of '' You think about this in a lot of detail, don't you?'' or '' Why are you thinking so far ahead? '' when I've chosen to speak out to them.

I am seeing my consultant again in March who I hope will be clearer with me as she doesn't beat around the Bush.

We have a beautiful DS and if anything happens to this pregnancy then we promised ourselves we would be done.

I don't have answers but didn't want to read and say nothing. This must be a difficult thing for you to even think let alone say out loud, and AIBU is sometimes a harsh place, so I hope responses are measured and kind.

Thank you Fudge. These questions seem cold even to me at times, but I know deep down they really do need an answer. It breaks my heart to think of it all but if a medically trained professional has advised me that yes I could end up with an extremely prem birth again then I need answers and a plan

Do you have a point in mind at which you would accept medical help?

A different scenario, but when my mother was dying I found I had to be very insistent with HCPs for them not to use euphemisms, sometimes in their efforts to be kind and sensitive it's difficult to get plain answers.

Chip Do you mean as in number of weeks? I don't know. But definitely after 24 weeks. They're just so tiny and really not ready. There are so many health implications. I think in a lot of cases it's be kinder to let them pass peacefully

I'm sorry about your Mum x

I think ChipBap has a good point.

What are your limits either way?
Be very clear to your consultant that you NEED to talk about this without fuzzy language.

I totally understand where you are coming from, hard though it is, I think it is good to think these things through. I have often thought that very prem birth is one of the hardest to make decisions round.

I think it will be difficult for you to know exactly how you'll feel should this situation arise - so I can definitely understand you wanting to be informed.

I don't have the answers to your questions but could I suggest you try joining any local neonate groups in your area and ask people for their experiences of raising a prem baby? Particularly the micro premies. There are often groups on facebook for your local area that you can join. People on there may also know what the laws are - although of course it could be a very raw / upsetting thing for them so do tread carefully.

Another source of information would be neonatal nurses and midwives. Again, they may be available to talk to via online forums, facebook groups etc.

Good luck with everything - hopefully this information you gather ends up being theoretical.

I’m so sorry for your losses.

I’d reply that yes you do think about this a lot as it helps you process and deal with it.

I’d have a list of questions you want answers to. Also be clear what your tolerances are as a previous poster said. What point will you accept medical care (also check whether that is actually your choice, I don’t know the legal position).

I hope all goes well x

You are very brave to think about this subject and also to consider options. You are quite right some very prem babies are very disabled after heroic treatments and you are right to consider this and talk it through with your consultant ( and possibly a neonatal paediatrician) In that way doctors should be aware of your thoughts and wishes. Bear in mind that if you give birth to a frail baby you may change your mind so keep all doors open. A good medical team may help to guide and advise you when the baby is born as it is not just a case of how many weeks, but condition at birth

Hi Refreshed. I completely understand where you are coming from and don't think you come across as cold.
I'm not a HCP but do have experience of having an extremely prem baby in SCBU for 4 months. As a fairly logical person, I sought answers to similar questions throughout that period. The HCPs at the time were very vague about anything to do with resusictation/viability/ likelihood of disability. At the time I was extremely frustrated by this but looking back I think it was because they really could not say anything with 100% certainty so they went with the option of "hoping for the best" type comments. Now, I can understand why they did that but then it was difficult.

It takes a lot of maturity to think about your options in this kind of situation OP however be aware it might not be your choice.

The doctors would make decisions in the best interest of their patient & next of kin wishes may be considered and/or be part of the process but any actual decision would be down to the doctors.

Any baby born with signs of life legally has to be given medical assistance. However at extremes of prematurity, usually the baby needs to weigh at least 500g for neonatal team to resuscitate.
Even if a baby is initially resuscitated, the first few days will decide if treatment will continue. As a parent you will have an input into what you want.
Usually parents push for resuscitation and treatment and won’t allow doctors to withdraw treatment even when the baby’s quality of life will be very poor. You are unusual in your clarity but not cold. I think you’re being very realistic
Good luck with this pregnancy. I hope you’re never in this situation. Will you be having a cervical stitch this time?

I don't know the answers to your questions OP, and I'd hate to be in a position to make those decisions.

My understanding has always been that before 22 weeks chances of survival are poor and doctors don't have to resuscitate, and any attempts to do so would be only with parental consent. At 23-24 weeks the doctors would probably give precedence to the parent's wishes, unless it was evident any resuscitation attempts were futile. I think that for babies born after 25 weeks breathing, then the doctors would have to offer full intensive care, though an exception might be if the baby was breathing but in a very bad way. These are just my thoughts, not facts.

Have their been any investigations done in to why you have not been able to carry to full term? I hope this pregnancy is the one where you manage to get past 37 weeks and deliver a healthy baby and sibling for your DS .

I dont know what to say, other than I am sorry for your losses OP

I made an account to comment because I wanted to tell you, my daughter was born at 23 weeks. She has no problems, she's a healthy 16 year old. Always reached milestones.

I ended up giving birth to my son at 21 weeks and they don't do nothing to resuscitate at that gestation. He was breathing and heart was beating for a few hours until he passed. The doctors did say if he somehow was saved he would have had life long severe disabilities.

X

@emilyldn I’m so sorry about your son, that must have been awful.

Great to hear your daughter is doing well.

My nephew was born at 23 weeks and is now 4 and absolutely fine. He’s a little mischief maker 😂

I'm so glad pps have commented with their experiences, because my initial thought, OP, is that I think you are setting the bar in the wrong place. While it's true that premature babies are more likely to have some complications, there are many examples of very early babies who go on to grow up with no long term health issues, or only very minor ones. That's why I think you need to be open to listening to the medical professionals caring for your child. They will have a better idea of whether intervention is worthwhile, or whether it would be better to let the child go peacefully, as you say. Because there isn't a clear limit about when that changes - no one can give you a week/day of gestation to hang on to. It will be different for every child.

On the borderline of viability your wishes will likely be taken into account. Every day/week after that will reduce how much say you get. Make your wishes clear, but be prepared to change your mind at the last minute.

Sending you lots of love, I would be the same and want to know all the information too.

I'm so sorry you're going through this. I was in the position once where we thought we would have a baby born at the edge of life. It was in a hospital that has international expertise in prem babies so would be in a position to intervene.
Myself and my partner were of a similar mind that we would not want a baby born on the edge of viability to be in hospital for months and months with painful interventions and potentially die with out much cuddling and human contact in its life, or survive with such significant and profound disabilities that they had no quality of life. (I am aware that this is the worst case scenarios and some lucky parents have better outcomes). We informed the doctors of our view in advance.

The doctors said that there are often some signs at birth about whether the baby would have next to no chance and whether to recommend palliative care but they also said basically we can cross that bridge when we get to it.

I am also aware that i may have changed my mind the minute i saw my baby born and wanted every kind of intervention done to give them a chance of life and that's also ok.

I found the miscarriage helpline very helpful for being a listening ear ( i hadn't miscarried i was at very high risk of it and feeling overwhelmed by all the questions and issues similar to you and had a lot of catastrophic thinking). www.miscarriageassociation.org.uk/how-we-help/helpline/

I can't imagine how hard it is for you to go through this multiple times. It takes a massive knock on your resilience. I can see why trying to have more of a plan would help you feel a little bit more prepared for such a scary and unpredictable time.

It is also frustrating that noone can give you a clear answer - because there are so many variations in what can happen and what the options are. Life can surprise us for better or worse.

It may be helpful for you to do some things that focus on things that are under your control. I found this helpful when i was going through such uncertainty.

If you're like me it's really hard to take things one day at a time - but i made myself do this ( and time limit the amount i spent looking at outcomes for premature babies week by week. Whilst pregnant I concentrated on thinking about what i would do if this was my last day with my baby and I decided that what i would do is: go out in the sunshine, eat some healthy food and cake, sing some songs and read a children's story each day and thank them for staying.

I'm sending all my positive thoughts for your pregnancy and your family.

Do they know exactly why you're miscarrying OP?

No, there are no answers as to why. Everything comes back normal

Okay, I’m not really sure how to write this so bare with me/ please don’t take offence, it’s just hard to get into words?

Life is no guarantee. For any of us, people enter non reversible cardiac arrest every day, have accidents, disease.

There is no guarantee for any of our children to reach adulthood and even then, there’s no guarantee they’ll outlive you.

The worry for a child doesn’t end, regardless of how old they are. I appreciate the worry is deeper in a situation of a 23-24 weeker. But where there’s life, there is hope.

So although you’re finding it hard to accept you may be faced with this situation again (understandably) I’m not sure there’s any logical mental ease in not allowing someone their fight. Because even healthy term children can end up becoming a loss.

And also- I’m not sure the inevitable ‘what if we tried to help them’ would be beneficial to your mental health.

At least when you allow help, there are no ‘what ifs’.

@Refreshed so sorry you have to think like this because of your previous sad experiences and I hope it doesn't come up. I don't know the answer for your question but I just wanted to say I think it's commendable that you are thinking through all of the potential outcomes, particularly since it must be so painful! I hope baby is full term and as healthy as can be

As a nurse I can tell you the following:

It IS fuzzy.
As in, we always work towards life, so if the baby is viable, and alive, then we WILL work to save the babies life, no matter if there are some developmental delays etc because anything less is murder in law.

If baby cannot survive without intervention or would pass due to needed medical interventions then we would let baby pass away in peace.

We always have to try.

It’s like someone of 99 having CPR, we have to try unless they have opted out. Unfortunately I don’t think you can opt out for a baby.

So it’s fuzzy because it depends on the viability and wellness of the baby and the doctor in charges view point.

Sorry if that comes off cold - I can only imagine what you are going through and it’s such a difficult consideration. Xx