to put a complaint in about my pre term birth

[Candyss]

hello,

my son was born at 27 weeks, completely unexpectedly. he came home 2 weeks ago and, aside from requiring a bit of home oxygen, has as far as we can tell come out fairly okay.

Now everything has settled down and we are out of the neonatal unit I'm starting to feel a lot of anger towards the situation.

I went in the day before I had him with bleeding. I was left for over 3 hours, was briefly checked and told no active bleeding, cervix closed and sent on my way, assured that it was normal to bleed occasionally in the second/third trimester. no scan or anything. their test to check for pre term labour also came back negative which they assured me meant I would definitley not be having my baby in the next 2 weeks.

the following day, I woke up with a lot of back pain. I rung up, again assured this is a normal part of pregnancy and putting extra weight on etc. due to this and the tests and checks day before, I ignored the pain until it got to 7pm and I was in so much agony I could barely walk. my dad rushed me to the hospital, although the hospital actually told me they were busy and to wait until 9pm. I couldnt wait. when I got there, they made me walk down the corridor to do a urine sample, then told me I was fine and had a urine infection, that was all. they said they would check the baby just to be sure. hooked up - baby fine. doctor eventually comes round to check me out and low and behold. my cervix is totally gone and my son is breech - they can see the water bag with his feet in it and I will be having my son that night, which I did via emergency c section.

He was whisked off to another hospital at a more intensive unit. I was put on a ward at the hospital I'd given birth in. when I came round from recovery I'd been put on a ward with other mums who all had their full term babies with them. I didnt even know if my son was okay.

I just feel so sad and let down now. I don't know why they didnt listen to me when I called, I dont know why they didnt scan me or check me properly the day I went in with bleeding. I didnt even have time to have the steroids to help his lungs. I'm not saying they could of stopped me having him early or that we would have got to full term. but atleast I could of had the steroids earlier. atleast they could of prolonged it.

my partner wants to put in a complaint but I dont know if it's worth doing. it wont change what happened :'(

I’m really shocked to hear about your experience. I had bleeding from 21 weeks and each time it was taken extremely seriously; usually I was admitted for monitoring. I got steroids early on, and after I did give birth I was placed in a side ward with another lady whose baby was also on the neonatal unit.
I just wanted to share because my experience shows that they can and should do better.

Definitely complain, it's always good to have them realise their mistakes and it may push them to do further retraining to help others.

I had very similar experience with all 3 of my boys

This all sounds very similar to my experience. I was lucky to be put in a side room after baby was born but I was sent home twice from hospital, told I had back ache, told I had an infection. One midwife actually said if my back ache was causing me this much pain I would really struggle with labour pains! I complained via PALS and had a debrief. The consultant at the debrief said it was unlikely they could have stopped it but if he had seen me he would have admitted me, so like you say, it might have helped with things like steroids or maybe delayed it. I can’t say the debrief made me any less angry or upset but it was helpful to discuss it, and hopefully might help others in future. Glad to hear your son is doing well xx

Maternity care is utterly shit on the NHS. Definitely put in a complaint although it won’t do any good. The quicker the NHS crumbles and is replaced by a better system the better!!

Bleeding especially in the 3rd trimester is not normal (although it often turns out to be fine) and requires monitoring at the very least. I would complain

I would complain. Because there might have been time for steroids, to mature the lungs. And magnesium sulphate, to protect the brain. I don't envy the obstetricians trying to predict the future, but looking into this might, for instance, trigger a policy change to the consultant having to be informed of any preterm woman on labour ward.

So sorry about your experience but had to reply. Please put a complaint in via PALS. I had a horrible horrible birth and my newborn also suffered due to the negligence of the midwives on the ward. You can access a debrief meeting with a consultant/professor if you just ask your midwife to book you in for one. They'll be aware of what's happened as they're able to read your notes.

I'd also request my full notes so you have a more detailed version than the ones just on your maternity notes. As pp has said, a complaint letter won't change what's happened to you (unfortunately) but it may help someone else. My complaint was so detailed due to such a serious situation, the hospital I gave birth in has now changed their procedure for the midwife to baby&mum ratio.

If you're able too, please self refer for CBT therapy which helps so much with the trauma. This is all so much information and you have a year to send a complaint letter in so take it easy and don't stress about it too much. Do everything when you're ready. Much love X

@AntiMaskersAreTwats a midwife would not have made the decision to send OP home. Any bleeding during pregnancy would've been referred to an obstetrician to review and they would make the decision. It is not within a midwife's remit.

OP, I would send a complaint. At my trust we have a 24 hour admission rule for any bleeding, so unless a woman self discharges we keep them for 24 hours to monitor for further bleeding and/or signs of labour.

For a debrief you can either contact the head of midwifery or PALS can put you in touch. They'll gather together all of your notes and go through everything with you.

Yeah that sounds awful. I can understand that you might not feel up to putting a complaint in because of the trauma of the whole situation but doing so might help other mums and babies. You said your partner thinks you should so maybe get him to do the actual writing of the complaint on your behalf.

Sounds like you have been very brave and I really hope you and baby are both on the way to a full recovery

I'd been put on a ward with other mums who all had their full term babies with them. I didnt even know if my son was okay.

Sadly this seems to be standard if you have had anaesthetic or an epidural, since it makes it easier for the nurses to monitor you. Apparently. Clearly, those responsible for that policy have never been on the receiving end, as it is absolutely torture. My preemie was whisked away before I'd even seen her, all I knew was silence when she was born. Dh said he saw her and she was still and blue. I just had to try to work on the theory that we'd have been told if she had died, but noone told me anything for three hours, and as I'd required a procedure for a retained placenta I had to wait until a wheelchair could be arranged before I could go to see her in NICU. She was born at one minute past midnight and I couldn't see her until 5pm. The only evidence I had of her existence was the tiny hat they had originally popped on her, which one kind midwife had made a point of bringing to me. That would have been bad enough in a side room, but on a main ward full of mums and newborns with happy visiting families? Sheer hell.

Definitely put in a complaint as and when you feel able to. In the meantime I'd highly recommend a debrief to help you understand what happened. I had one with the hospital which was really useful (got referred for one by my health visitor) but if you haven't already check out @mixingupmotherhood on instagram who is a midwife who does impartial debriefs which may be more useful in a situation like yours where there were clearly mistakes on the part of the hospital they may not be too keen to admit/discuss.

@Tronkmanton

I’m sorry you went through this. I went through very similar with my DS 16 years ago. What I can tell you is that steroids need to be given quite sometime before birth to make any difference. I don’t know how long but it’s definitely more than a few hours and could be days. There is also nothing they can do to stop you going into labour or even prolong it (unless things have radically changed) so at least you were in hospital & able to have a section. Therefore even if they’d realised earlier how imminent his birth was, there was little else they’d have been able to do, especially as he was breach. I found that a conversation with my consultant obstetrician was helpful as I was able to ask lots of questions about the way the birth was handled etc that put my mind at rest that little would have been different if they had ‘acted’ more quickly. Transfer to another hospital at birth is also pretty usual for premmies under 30 weeks unless you are lucky enough to give birth in a specialist hospital. The whole experience of a pre term birth, even with a good outcome, takes some time (years in my case!) to process. Definitely ask to discuss with your consultant.

I think this so the most useful post you will have OP. I think a debrief will help see that in these situations there isn’t a manual and they have to use the observations which suggested birth wasn’t going to happen but with spontaneous preterm births….it’s exactly that

Please Go to your gp when you feel ready for
Trauma support as you’ll be prioritised for the first 2 years following birth so will been seen really quickly. Trauma can sometimes take time to process and not need therapy as such but reach out if you need to as there’s support for this.

So on your first visit it feels like they did the right thing- they did the fibronectin test and your cervix was closed. A scan would probably have not given them any additional information.

The second time around they got it badly wrong. If there was time between noticing your waters breaking and the C section why weren’t you given steroids? Mag sulphate can be given just before a C section (I was given it then) and I have a 26 weeker. Even a few hours of the steroids is better than nothing. And also I assume you were in active labour otherwise just a premature rupture of membranes should not result in birth. In very prem babies aka under 28 weekers the risk of infection is balanced out by the risk of harm to the baby from a pre term birth so a woman can be left alone post PPROM. I went nearly 5 days and got two steroid shots in. But I wasn’t in labour and I wasn’t dilating.

On the other hand, as the mum of a 26 weeker, hang in there. Mine is nearly 5 and a hell raiser and a loudmouth. We are very proud of him.

I am so sorry this has happened to you.

In the UK births of this nature are routinely investigated by the risk management midwife. Ring them and ask to be part of the investigation. There is something called a ‘duty of candour’ in the NHS where if something has gone wrong, they have to notify you.

Do you know who your consultant is? Ring the hospital and ask for their secretary. Then ask for an appointment with the consultant. They are usually done in our unit at 6-12w post natal. You don’t say how old your baby is.

I would also ring the hospital where your baby was born and ask for the PALS service. They will help you to formulate a complaint and provide you with an advocate.

Please consider counselling too. There are those who have a specialty in birth trauma.

Also yes he would have been taken to a higher level NICU based on the care he needed. Women who have had pre term births really shouldn’t be put on wards (I begged and got a side room) but some hospitals don’t always have these options.

And yes it takes a while to process. I am slowly at the point that I don’t want to spend the week leading up to his birthday hiding in bed. And I can truly celebrate him. And he’s nearly five. (We have always had a big party etc but then I collapse mentally).

1. request your notes, your nhs trust page will have an email for this. Don’t worry about the box where it makes you promise not to sue, I’m fairly sure they can’t hold you to it (you would just have to re-request your notes.)
2. before they come write down everything that you can remember about your birth. Ask your partner to do the same.
3. have a debrief with a private midwife if you can possibly afford it.
4. request a debrief with the hospital.

1-3 will be really useful but also prep you for the hospital debrief in case they’re unsympathetic/ back covering. Mine actually wasn’t in the end but I had heard horror stories.

I think you should complain. They treated you badly. They should have taken you seriously and possibly given steriods to encourage lung development if they suspected you were going to deliver early. The NHS is over stretched but there is no excuse for this stuff. My waters broke so I went to hospital but no one believed me so I went home. I knew I was loosing water and had been for hours coming up to 76 hours. I went for a 5 mile walk after googling ways to start active labour and it did the trick. I noticed in my labour notes it said my waters were never apparent. They ignored the fact that my waters had broken which is really dangerous for unborn babies and it was just good luck that it worked out OK for me. Congratulations on your new baby DS

thanks for the responses. I've just put in my complaint and I've messaged my midwife.

I just feel like I was so dismissed and brushed off - almost eye rolled at when I went in, as if I was making a big fuss over nothing. one of them even asked if I had thought of taking paracetamol for the back pain instead of coming in. I keep forgetting things like that, I've tried really hard not to visit his birth atm.

I'm sorry for what you went through.
There is something called 'birth afterthoughts' where you can talk to a professional about your antenatal/postnatal and birth experience.
I've heard it helps bring closure.
Ask at your hospital

Complain, complain and complain.

I work with pregnant women and tbh they have been treated awful during the past 18 months.

Midwives have always had a reluctance to listen to woken when they say something is happening. I got told with my last one I wasn't in labour and was ordered to get on the bed by a pissed off midwife who was shocked I was 7cm dilated. Apparently I wasn't out of breath enough for her to believe me.

What what happened to you could have cost your baby its life. Lessons need to be learned here.

women**

@Motheroftigers

Complain, complain and complain.

I work with pregnant women and tbh they have been treated awful during the past 18 months.

Midwives have always had a reluctance to listen to woken when they say something is happening. I got told with my last one I wasn't in labour and was ordered to get on the bed by a pissed off midwife who was shocked I was 7cm dilated. Apparently I wasn't out of breath enough for her to believe me.

What what happened to you could have cost your baby its life. Lessons need to be learned here.

this is what I'm struggling with and what I have added into my complaint. At its worst - I could of stayed at home and given birth to my son at home where I cannot imagine he would of made it. yes they did the same to me. eye rolled, made me walk to the toilet down the corridor to do a urine sample, told repeatedly to lay on the bed and denied any pain relief. no warmth at all or understanding.

Bless you. Definitely complain. It’s not on… they need to listen to women, we know our bodies. I was 40+10 with my 3rd baby & called to say my contractions were EXTREMELY painful but still 8 minutes apart. I called twice actually & they told me to stay at home because they were still too far apart so I wasn’t in established labour.

I ignored them the last time because I knew, I just went up. I ended up having my (very large) daughter in the lift - & she got stuck. She had to be forcibly pulled out which was awful & then given oxygen when she was born.

If I had listened I would have been at home with a baby who was stuck & terrifyingly she probably wouldn’t of made it. They NEED to listen to us. I felt so angry and patronised. Sadly I too was just grateful she was ok and didn’t complain, but you should OP.

I am so sorry you went through that. I had a terrible experience having my fourth baby 6 months ago and I am still angry now. I couldn't make a decision about whether to complain or if I even had reason to complain... and ended up not doing anything. But, I have have had 3 other births, two of which had complications, and never have I experienced such mishandling of every single aspect. I'd say they were completely neglectful of my wellbeing at every stage and me and my ds are lucky we're here and ok.