Birth injury has ruined my life

[Cantpee]

I’m looking for advice/wisdom/encouragement from people who have had a health issue and come out of the other side. At the moment my life feels extremely difficult as a result of a birth injury.

On Christmas Day I had a cat 2 csection. I had a csection with my first DC, and had elected to have another. Due to availability at the hospital it was pushed back from 39 weeks to 41 weeks. Of course I went into spontaneous labour at 39+2. The hospital delayed me going in saying I couldn’t possibly be in labour, and when I did go in I was having contractions lasting 1-2 minutes every 3 minutes.

When my DC was delivered as he was in the birth canal my uterus tore past the incision they made. When fixing the tear, some damage (it’s not yet clear what) was caused to my ureter. This is the tube between my kidney and bladder.

So it became clear after a day or so that no urine could drain from my kidney. My kidney got very swollen and painful. My kidney function was greatly reduced resulting in dangerously high potassium. A week after my son was born I had to have a nephrostomy tube placed.

The nephrostomy is really hard to live with, I have pain on a daily basis. It’s severely impacted my body image. I can’t swim or have baths. I can’t use a baby carrier or sling. I can’t wear what I want as it’s in my back. I have had numerous infections both in my urine and wound and have been on at least 10 courses of antibiotics since Christmas. I am always at hospital appointments or the gp when I should be enjoying maternity leave.

At some point soon I will need a second surgery to re-implant my ureter into my bladder. This will be a 10 night hospital stay, 2 weeks with a Foley catheter and 8 weeks with a ureter stent. I’m not sure yet if my kidney damage caused by the swelling is permanent.

At the moment I am really struggling with everything, at times I feel so overwhelmed and wonder if my life will ever be ‘normal’. It’s hard to find support in real life as many people are horrified by the initial issue. I have been quite resilient trying to carry on like normal and a lot of people close to me have stopped asking how I’m doing. I guess I’m looking for some positivity from people who have been in a similar position with their health, and seen it get better?

Thats terrible and so avoidable. How terrible for you.
I dont have the same at all but I do have 3 terrible diagnosis that are bad. They have been life changing. No fault of my own.

I think id find yours more difficult.

Bloody hell you poor thing.

I haven’t got any first hand advice but didn’t want to read and not say anything.

Have the hospital apologised?

not sure I have anything helpful to say but sending best wishes and hope you get through this and a chance to enjoy your baby x

I can only assure you that permanent kidney damage is very unlikely. Try the Birth Trauma Association, they can put you in touch with someone who has been through something similar and guide you through your recovery.

You poor thing. Can’t advise from a medical point of view but once you’re feeling well enough, please consider instructing a solicitor as this sounds like medical negligence. Money won’t buy you this time with your baby back, but it might help pay for good medical care in the future.
Hope things improve for you x

I’m so sorry you went through that and would definitely second contacting the Birth Trauma Association 💐

The hospital have investigated and I have a meeting with them soon, although I expect they are going to say it was an unfortunate complication. I am just struggling so much to see how my life will ever be ‘normal’ again. Living with constant worry of infection and surgery is so draining.

You poor thing, how traumatic.
Will the next operation mean you get rid of the nephrostomy tube?
I'd find it hard to forget how badly the hospital let you down tbh - not believing you were in labour?! Appalling treatment. I wonder if you have a case for negligence.
I have no decent advice to give, except to wish you well, and enjoy your baby as much as you can x

I have got a solicitor. I know the money wouldn’t bring back the time lost with my baby, but I would use it to reduce my working hours so I can spend more time with them once my surgery is over.

Yes the next op should mean my urine can drain into my bladder again so the tube would be removed.

I'm so sorry OP, this sounds horrendous. Years ago my friend worked for the Association for Victims of Medical Accidents (AVMA). I'd consider contacting them if I were you, they're a charity that can support you if you want to take things further. Is your partner able to go to the hospital meeting with you? If not can you take someone else?

Oh I'm sorry I see you have a solicitor. I'm glad x

I’m sorry to hear you’ve had such an awful time. While I don’t know anyone who has been through what you have, I do have male relatives who have had long and complicated operations on their kidneys and urethras (right down to the male exit point) and they live normal lives now. Without going into details, it’s amazing what surgeons can do, their lives have been transformed by these operations.
In a sense, you have experienced the worst side of medical practice, but every day there are people whose lives are transformed by surgery. I think that once you have had the op, and recovered, you will be able to put this behind you. Do you have a time frame of when the operation might happen? When life is really tough, we tend to think it will be that way forever- I’m speaking to myself here too. Try to focus on the end point and remember that it won’t always be like this.

Oh OP what a rough time! It’s so hard when you daily are in pain / uncomfortable to be happy and optimistic. I think people underestimate the effect of life long issues and how it affects you mentally.

Do you know what the % chances are for your upcoming operation around long lasting affects? If the % decreases massively and you could have a life with minimal/ little pain. It’s super hard but try to focus on that if it’s good news.

I had a disabling injury that changed my life ….found enormous comfort from a Facebook group for others with similar trauma injuries…have you thought of peer support that way? Some friends IRL were amazing others a dead loss ..it was eye opening

I just looked and found 3 active Facebook groups …I’m sure they will give you the outlet to rant and get advice or whatever …in mine the support is brilliant, you feel so much less alone and find ways to ease practical issues. The best Consultants are shared and more. It’s a huge help

Bless you, and you too OP. 😢❤️

I've been through a lot over the past decade after a head injury and post concussion syndrome before being injured permanently by an off label antipsychotic prescribed for severe insomnia and anxiety after my concussion.

It gave me a permanent neurological involuntary movement disorder called tardive dyskinesia that is a bit like Tourette's and Parkinson's disease combined 😢

Not quite the same or as awful.as yours, OP, but i do truly understand what it's like going through hell because of a botched medical procedure. And yes, it is absolutely horrible but you can get through the worst and be ok.❤️

I know it doesn't feel like it now, but things will get better and although your life is certainly difficult and different, please try not to keep it from doing all you want to. It's hard but you are doing everything you can, and being brilliant when under difficult and unfair circumstances.

Hugs from me ❤️

I also had a c section with an unintended extension which tore into my broad ligament and caused hemorrhage. Have you referred yourself for counselling? I knew noone else who had a uterine extension and didn't realise how traumatised I was for a long time, later diagnosed with PTSD from it.

You can always pm me if you need someone to talk to. I didn't have the bladder/kidney injury but know all too well how some people react to your c section injury birth story and how challenging that is when you are still suffering the after effects x

Thats terrible to hear :(

Hopefully when you get the second surgery you'll start to feel better and allow to do more things. I'm assuming the 'plumbing' will be all internal?

And I'm just thinking out loud here - but if there is kidney damage and it is severe, I wonder if removing the kidney would be a last ditch option to get your QOL back? My friend had a primary kidney cancer, had the affected kidney removed, and is doing brilliantly now.

I also had a haemorrhage although I wasn’t aware at the time. I’m having therapy for anxiety which has been caused by all of this although my actual ‘birth’ wasn’t super traumatic as it was only after that I knew something was wrong! Have you been told not to have any more children?

Thank you I am in a few birth trauma groups although I’ve only managed to find a few people with injury to their ureters. A couple have long lasting effects even though they have had surgery, like frequent UTIs and some pain.

TBH I'd want to sue so I could get it properly sorted out privately. The NHS has gone to shit and this could easily have all been avoided.

Aww my search was nephrostomy and those support groups, you've been through a ton 💐💐💐

Luckily my private medical insurance will cover the fix. The NHS haven’t even got me in to see a consultant to discuss treatment yet!

No I was advised I could have more though i did choose to wait longer than needed and to have an elective section so I could lessen the risk of it repeating/uterine rupture. I agree at the time you just put yourself in their hands and its only after that it hits you, particularly the "what ifs". I was numb for months and almost fronted it out when telling people if that makes sense.

After proper ptsd support via the GP I am doing much better, though I still have my moments. My anxiety was off the scale - when my parents babysat I gave them 3 pages of guidelines and info about the baby to follow...I wince when I remember that now!