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Premature birth

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Birth injury

15 replies

yellow92 · 03/07/2021 05:10

Sorry this will be a long post and please don't judge.

Has anyone ever put a successful claim forward towards the NHS? I feel absolutely rotten for thinking about doing it but I honestly still suffer 5 months later, I cry every day and I'm still deeply traumatised by my whole experience. I will say I absolutely appreciate the NHS and I am thankful but it doesn't take away my pain and suffering or my daughters. Story below and I would like opinions.

So I was pregnant with my daughter, I was consultant led due to previous emergency c section with a IUGR baby, this pregnancy I was high risk of developing pre eclampsia and IUGR.

I get to my 20 week scan and baby has started to drop on the centile chart, so I start having more growth scans, each week she was dropping more and more off the centile chart and her movements were getting less, the week before I had her she completely dropped off the centile chart with intermittent absent cord flow, she was severe IUGR, a few days later I had another scan, showed high PI in my cord flow and i again mentioned I was barely feeling her move at this point, they sent me straight to a assessment were baby was having heart decelerations on the CTG, they kept me in overnight and gave me 2 shots of steroids and sent me home the next day, that was Friday night I got sent home, I went home and went straight to bed, the next day I woke up and I couldn't feel my baby move at all and I was having lower back pain, abdominal pain, my belly kept going rock hard so I went back to the assessment unit and was given another CTG, I failed the Dawes redman criteria due to baby's reduced variability on the CTG, I told the doctor about my pain and she just said to go home and take paracetamol, before I got sent home I was made to do a urine test which showed high levels of protein in my urine, they didn't tell me this I heard them speaking about it outside the cubicle but they still sent me home. At this point I'd had enough, I got home and the rest of the day and night I thought my baby was dying and nobody was listening to me or taking my medical history into account, I spend the day in agony in bed, that night I went to bed I developed a headache but didn't think anything of it, the next day I still had the headache and abdominal and back pain, no movement whatsoever, I decided I would take a bath and go back to the hospital, at this point my anxiety was out of the roof thinking my baby had died, they was not even a flinch of movement and I felt unwell, I walked up my stairs to take a bath, I remember walking up the stairs and feeling a nasty awful pain suddenly in my lower abdominal, i thought I might have caught a nerve so proceeded to crawl up my stairs and have a bath, after 3 minutes I couldn't take the pain or headache anymore so I got out, I walk downstairs into my kitchen I felt a feeling wash over me that I'd never felt before in my life, I felt like I need to lie down and sleep, tiredness I've never ever felt, suddenly I felt a warm forceful Gush between my legs, I thought my waters had gone, I look down and blood wash gushing everywhere, I felt faint and unwell, a ambulance came and started pumping me with fluids because at this point my blood pressure was 45/25 I was about to go into shock due to blood loss, I lost nearly 2litres before I arrive at the hospital, when I got to the hospital they delivered her within 9 minutes via emergency c section, she was born at 27w weighing 1lb 4oz. I had severe pre eclampsia which caused a complete placental abruption. My baby came out suffered hypoxia and wasn't breathing, she needed resuscitation, the said she was in poor condition. Fast forward the next day, I was still unwell, completely tachycardic, dizzy, just plane unwell, hemaglobin blood levels just kept dropping into 80s then 70s but they wouldn't transfuse me, they never transfused me for any of the blood I lost until 3 days later, I collapsed in the corridor and banged my head really hard, no midwifes around to help, the security seen on cctv and had to run to my ward hallway, they finally transfused me, I was still unwell, my vision was all completely blurry and weird I was seeing weird floating shapes and felt weird but I was told to drink water, baby was in nicu and then I had a visit from the nicu doctor, on inserting a catheter into the umbilical vein they have snapped it and it's travelled into her descending Aorta which is now a medical emergency, they need to stabilise her and send her to a surgical NICU with neonatal cardiologist ASAP , upon arriving we are greeting by a team of heart doctors who basically tell us this is very very rare injury in fact she will make the 2nd case worldwide which scared the life out of me, it made me feel sick, I just wanted to do kangaroo time but I wasn't allowed to hold her incase the broken catheter migrated into her heart chambers, I couldn't even get milk supply I felt like a failure, haematology put her on blood thinning injections daily to prevent clots forming around the broken cannula which made her little legs go blue, it was horrible watching her scream having them, Weeks pass and a doctor says they want to leave it in the descending aorta and hope extra vessels grow around it, a week later another doctor tells me she might get a aortic aneurysm and die if it gets left, then another doctor says they need to take it out ASAP, they need to cut through her neck artery and take it out, she will loose her cartiod artery in the process but there's a high chance she won't make it, if she starts bleeding out and they can't control it they will have no option but to let her pass away on the operating table, at this point I felt suicidal I told them no to operating, every day I thought my baby was going to die, she was 12 days old when I was first allowed to hold her, I loved her so much it hurt but I just didn't want to bond with her knowing the ugly potential prognosis.
She continued to have extreme desats and Bradycardias, as weeks continued to go by she had multiple antibiotics due to multiple infections in her blood, due to the broken catheter, they gave her lumber punctures and blood transfusions without my knowledge, she was just constantly pricked, when she was 36 weeks gestation they urgently wanted her referred to great ormond street and get them to removed the catheter, she started going down hill with constant infections, her heart when getting effected at this point so she was rushed over 100 miles away by ambulance, I was told she might not make the surgery and this surgery is the first they have preformed, I gave my baby girl a kiss and walked her to the surgery door were I had a breakdown, I was alone, I was left alone I had no emotional support, I sat outside the hospital for 6 hours crying like I've never cried before in my life thinking my baby was gone, I got the best call of my life 6 hours later saying my baby had pulled through and they were bringing her back up, she was wheeled in with half the hospital staff applauding the surgeons for succeeding, when I seen my baby I burst out crying again, her little eye were half open and glazed over, she was on a ventilator, she has a cannula stitched into her neck and arms, she took 3 days to come off the ventilator but needed oxygen after as she struggled to breath, I held my baby like I've never held somebody before. I held her so close to me. She then needed to be transferred back to a nicu closer to home but none was available so we went to a nicu just outside of our city, her 4th nicu were we discovered she has a broken arm, nobody could tell me how, she was then discharged from nicu 10 days later weighing 4lb 6oz, at home she couldn't feed without aspirating, choking and having hypoxic episodes, she ended up rushed back into children's hospital were it was discovered her NG tube was taken out too soon and she wasn't ready to be orally fed, they re inserted a NG tube and trained me up, they said I would hear from speech and language and have a doctor review ASAP but our details got lost on the system and I was left home with a baby who couldn't feed, had severe projectile vomits, aspirates and chokes, I was left to deal with it alone, she still can't breath when feeding. She's now left with a large scar up her abdominal.

We discovered that the broken catheter was she same size as her descending aorta and it has completely blocked her blood supply to her legs, so she will be under cardiology for a very long time, as it stands her weight has gone up to the 30th on the centile chart but her length has been effected, she's still 0.4th centile.

I haven't heard back from this investigation they said it was classed as a serious incident and I would hear within 6 weeks of it happening and it's now over 5 months and still nothing. I did hear from my pregnancy care investigation were they said I shouldn't of been discharged I should of been re scanned 4 hours later.

I have differed alone my mental health is in tatters, I've been to A&E 9 times thinking I'm having a heart attack due to the stress I felt. I couldn't even get a post partum check up and to rub salt into the wounds I have a call yesterday 5 months too late offering me my post partum check up. Apparently my name got missed off the list.

My daughter also had mottling inside of her due to rotting I didn't know these things.

I feel I need a lawyer but I feel immensely guilty, I am still traumatised now, I have the same nightmare every night that I'm walking around the hospital with my baby in my arms crying and she passed away, the doctor who sent me home calls me up some twisty stairs and I always wake up upset. I suffer severe health anxiety since, I have been diagnosed with dissociation and PTSD, my life has completely changed, when I go into the shops I feel like i suddenly need to escape and I feel like I'm going to die, I still burst out crying every day, people can tell me to get over it and I try but I just can't, I have nightmares, I have trust issues with doctors, I feel pain around my whole body daily. Every day it's a battle I can't win. This whole thing has ruined my life. I don't think il ever be the same again. It's 5:08am and i haven't slept yet my baby is still tube fed every 2 hours. She's a amazing beautiful little girl who's my miracle and who I love so much but I'm so angry and pained by everything. I just feel we need justice and some closure. I won't get that until they admit and apologise. No matter how hard I try I just can't move past it.

I'm sorry for the long post I've felt really upset tonight

OP posts:
Teaplease29 · 03/07/2021 05:24

No advice regarding claim but couldn't read this and run. I'm so so sorry this happened you to and your baby girl The whole experience sounds utterly horrific and terrifying at every turn.

I hope you get your justice and your closure. Sending so much love x x x

HoppingPavlova · 03/07/2021 05:54

There’s a lot to unpack there and probably first and foremost you need to be under some psychological assistance as you don’t appear to be coping so I would make that the priority.

The admit and apologise part is fuzzy. Is that the priority or legal action? If wanting an investigation into care then PALS is probably your first step. If wanting legal action then it is worth engaging a medico-legal service to discuss your case. From what you have written it would seem likely that errors were made in regards to your care.

Your babies origin of issue and care is a lot more subjective and I say that as a parent who had a newborn who had major surgery immediately after birth and was critically ill in hospital for several months, and as someone who was a doctor in the hospital system for decades.

I imagine in a medico-legal sense the way interplay between your babies cascade of events and their birth due to questionable medical care would not be clear. Likely they would have born at this gestation due to IUGR anyway and required the same interventions. Maybe a litigator may dispute this? The initial injury she suffered due to her care, that’s a hard one as was it due to carelessness or the fact that neonates, and particularly of the gestation you refer to, are small. Do you understand how small veins, arteries etc are? Any procedure is essentially microsurgery and there’s a huge scope for things to go wrong. Many things went wrong in my babies surgery and subsequent care. Not because the surgeons and neonatologists were careless or thought it would be fun to cock up but that’s the reality when you are dealing with procedures with such tiny structures to work with. Mine also had some broken bones that I didn’t find out about until later but these were not caused by carelessness such as dropping them but due to manipulations while urgently having to get to get to other bits etc. They are so focussed on the major issues at hand these ‘minor’ things do tend to get lost in communications and I don’t believe that’s deliberate as they are clear in the records and some of them are only known retrospectively.

Sounds as though you now need support with the feeding/OT/ST/paed team at the hospital. I take it you are doing a 2hr bolus? Maybe explore with them the option of a pump, it can be continuous feeding (x drops/min) or larger blouses at intervals. I found this a life-saver. It’s awkward with a baby constantly connected to a machine but if it saves you doing 2 hourly feeds and stops the choking/vomiting (as it did for mine) then it’s a good trade off and it won’t be forever.

When anyone flies through this with a baby it is a given their life will completely change. That’s unfortunate but reality. This should have been anticipated for you though and sounds as though it wasn’t the case. I was basically put on meds immediately we started the journey in hospital and it was the best thing. No one copes with this sort of stuff and no be used meant to and it seems maybe you have been let down with that support. Hope things move upwards for all of you.

OldTinHat · 03/07/2021 07:14

Good god. I'm utterly speechless.

ivfgottwins · 03/07/2021 07:37

I'm so sorry to read what happened to you and your daughter

A friend of mine did successfully sue a hospital for causing brain damage to their little boy during a forceps delivery. It took years though - I think it was around 6 years in the end

Another colleague also sued and won in relation to a decision being made which paralysed his mother. He pretty much had to give up work to fight the case

You definitely need a legal team and one that specialises in medical negligence.

I think the failure in your care stems from day 1 - when I was in hospital with reduced growth for my twins I wasn't allowed to be discharged until both twins had passed the Dawes Redman tests twice in a period of 6 hours

Maggiesfarm · 03/07/2021 07:45

yellow92, what you and your baby went through is heartbreaking. You have explained it well from start to finish. Please make sure you put it in writing to anyone who can help you. It is so very sad. PALS is probably your best first step but try to find a good medico-legal solicitor to advise you how to go forward.

I hope your daughter is now well and thriving. You need some professional help to get over the trauma. You have nothing about which to feel guilty, nothing at all.

yellow92 · 03/07/2021 12:49

Hello all thank you for your replies.

@HoppingPavlova thank you for taking your time to reply to me, I understand what you are saying with babies being small however a misplaced catheter is not the case, the problem here is that it was pushed in to forcefully and half of it snapped off inside of her. These doctors and nurses who specialise in neonates are trained to work on smaller babies, it's not acceptable just because they have small veins. If that was the case many babies would get injured. Im not taking away the fact these doctors and nurses are human beings and yes mistakes do happen but it hurt when it happened to my family. I really do appreciate everything they do and I know they do a world of good but that doesn't take away what happened. I appreciate your advice on feeds, it's quite tiring isn't it:( hopefully won't last forever, hope your little one is well:)

I did write to PALS already, I had my antenatal care reviewed and have the outcome of that investigation which they said I shouldn't of been discharged and should of been re monitored again 4 hours later. Unfortunately that wasn't the case.

My daughters had already been flagged up as a never event serious incident. That was 5 months ago, I was told 6 weeks to hear back but it's been over 5 months now and I've heard nothing.

I have found it hard to get the support I need as I haven't seen anybody since leaving hospital. I tried to get doctors appointment multiple times but they wouldn't offer me anything. I have since been in a support group with other mums online which has helped but I can't help but feel angry by everything, I still feel I am processing this trauma. It's been a really hard time. I'm hoping as time goes on I can heal. Xx

OP posts:
HoppingPavlova · 03/07/2021 13:48

My little one is not little, it was nearly 20 years agoSmile. They are not well as such but that’s not through any fault of anyone’s, just conditions they were born with. Still giving the medical community a run for their money Grin.

BrownEyedSquirrel · 03/07/2021 18:00

No one should have to go through the pain, heartbreak and anguish that you have.
In fact, most probably never experience such trauma in their lifetime.
It's little wonder you have anxiety and ptsd; I think any parent would.
I hope you have supportive people around you and people who can care for your DD so you can take regular breaks.
Wishing your little daughter all the very best, she is a wee fighter.

GlubGlubGlub · 03/07/2021 18:10

Flowers OP. So sorry to hear about what you and your daughter have been through.

I am a solicitor specialising in Birth/maternal injury cases. I would recommend that you get in touch with a charity, AVMA (action against medical accidents). They can point you in the right direction.
I also second what a pp said about speaking to your GP.

Mollyboom · 03/07/2021 18:15

Please contact a clinical negligence lawyer. They will listen to you. The medical establishment will close ranks, you deserve answers in nothing else.

TreaterAnita · 03/07/2021 18:25

Hi OP, I’m also a clinical negligence solicitor and would absolutely agree with Glub’s advice to contact AvMA. I’m so sorry that you and your daughter have been through such a terrible time.

October2020 · 03/07/2021 18:36

I'm so sorry you had such a horrific experience. I can relate to some of it with my own story.

I think there are three areas here that.

  1. You need psychological support in place, now. Speak to your Dr and ask to be referred to the perinatal mental health team. They will provide you with some support to begin to come to terms with what happened. If you can afford to pay privately, then I would do. You're going to need a LOT of therapy (I'm 10months in to weekly therapy discussing my birth trauma and only now just touching the sides).
  1. You need a birth and NICU debrief with the hospital, especially birth debrief. Your story is (understandably) very muddled and a birth debrief (where a consultant talks you through your notes and the decisions they made) will help you to make sense of what happened. When you are experiencing a hugely traumatic event, your brain struggles to keep up and keep things in order. A debrief will help you to do this.
  1. You need to speak to a lawyer who specialises in medical negligence claims. They will be able to advise you whether this is a 'you had a horrific experience and the hospital are negligent' situation, or a 'you had a horrific experience and you are understandably traumatised but the things that went wrong weren't caused by deliberate fault'. Neither changes the level of your trauma - and actually in some ways knowing that it wasn't anyone's 'fault' actually makes it feel worse (from my own experience of my daughter's treatment in NICU). You need the support of a legal professional to even begin to unpick this.

You may also want to follow some of these accounts on Instagram:
miraclemoonuk
thebirthtrauma_mama
nicunatter
...they will help you to feel less alone. You are not alone. xx

NotMaryWhitehouse · 04/07/2021 08:08

No advice really OP, but what you have been through is absolutely mind-blowing 💐

It certainly sounds like there is a whole list of things to go through- do you have anyone at home, or close by, who can start to chase these things up for you? You're busy advocating for your baby, but you need someone to advocate for YOU now as well.

I really feel for you, I had a very early baby too earlier this year, but had a very different experience with doctors etc. I cannot actually believe how much you've both been through.

Take care of yourself and please let other people pick up the slack at home and help where they can, you really deserve a break.

NotMaryWhitehouse · 04/07/2021 08:10

....and for what it's worth, I wouldn't have been able to just 'move past it' either, and if someone is suggesting that, you need to show them this thread so they can try to understand how you're feeling.

NotMaryWhitehouse · 07/07/2021 21:01

How are you feeling OP? Hope you're doing ok and your little girl too. 💐

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