Guest post: "Women are expected to go home with life-changing injuries after giving birth and just get on with it"

[JuliaMumsnet]

For Birth Trauma Awareness Week, Jen Hall from the MASIC foundation, which supports women who have suffered serious injuries during childbirth, writes about her experience of childbirth and the MASIC's Foundation latest findings:

"When I gave birth back in 2013 I had no idea what lay ahead of me. I’m not talking about the sleepless nights, breastfeeding battles, or any of the other aspects of new motherhood that are widely talked about. What I had to cope with alongside new motherhood is something that is rarely spoken about - yet is a major trauma for the thousands of women affected each year.

Severe birth injuries, or third- and fourth-degree tears, are injuries that extend from the vagina into the anal sphincter and are a leading cause of bowel incontinence in women - alongside pelvic floor dysfunction, pelvic organ prolapse, nerve damage and impaired sexual function.

My birth injury was caused by being left to push for three hours, causing a traction injury to the pudendal nerve, followed by two failed attempts with the ventouse and a brutal forceps delivery where my baby’s head and body were delivered in one contraction. Long term it has left me with many of the symptoms listed above. I’m a shell of the person I was, my confidence has been deeply affected, and I no longer feel like a woman who has control of her body.

My experience of motherhood was deeply affected by the injuries I sustained. I didn’t walk into hospital at 33 years of age to have my baby and expect to come out unable to run for the rest of my life or to carry out the most basic of bodily functions.

At The MASIC Foundation we carried out a survey at the beginning of the year to try and assess exactly what impact sustaining a severe birth injury can have on your experience of motherhood. We knew women would find this difficult to talk about, so the survey was completely anonymous. The survey ran for a month across our social media channels, and we received responses from 325 women who self-identified as having suffered severe perineal trauma when giving birth.

• 85% of women who sustained severe maternal perineal trauma said it impacted on their relationship with their child.
• 49% of women said they doubted their ability to mother because of the injury.
• 46% said the injury affected their relationship with their partner and wider family.
• 34% felt their relationship with their child was affected because they associated their child as the cause of their injury.
• 31% said they wondered whether their child would be better off without them.
• 24% of women affected regretted having a child because of the injuries they are left with.

The results we have gathered are shocking and heart-breaking, and show in stark reality the impact these injuries are having on mums and babies each year. These injuries can lead to feelings that no woman expects to feel or wants her experience of motherhood to be. The results are hard to comprehend. But if you have suffered a severe birth injury, I’d wager you can relate to some of these feelings.

I felt that I was a failure after my birth, that there was something wrong with my birthing body that had led to this. I spiralled into a deep depression, unable to comprehend that a) having a baby could leave you like this, and nobody tells you and b) women are expected to go home with life-changing injuries and just get on with it because they are mothers now.

And these feelings led to a complete rejection of motherhood in the early days. If my body could be treated so casually as collateral damage, then why did either of us matter anymore? What good would I be to my son if I couldn’t ever lift him, play or run around with him? I fixated on the time before my pregnancy and birth, before everything ‘went wrong’. I’d unwittingly given permission for an assault on my body that had profound implications for my future.

If I tried to speak out about how I was feeling to the health visitor or to my GP I felt like I was being judged on my ability to parent. I was told my injury was ‘all in my head’ on numerous occasions and another health professional suggested that maybe it was because ‘deep down I didn’t want my baby.’ The ignorance and judgement I faced only worked to compound my isolation and distress and I feared I was a bad mother because of the things I was being told every single day.

The feminist inside me was raging.

My feelings are echoed in accounts we have heard as a charity, from other women who experienced severe injury during childbirth:

“My confidence, my me-ness, the essence of who I am, has been destroyed, my relationships with my child and my partner have suffered.”

“With my son, I love him dearly, he is the best thing in my life, but his birth caused the injury and it is difficult to square the two,”

“Every year I dread his birthday and the reminders of my traumatic experience. It is not fair on him or on me – his birthdays are not a happy occasion, but every year I have to pretend it is.”

“I am ashamed to say that at times I wished I had never become a mother and I grieved for the life I had before, I paid such a high price to have a baby.”

I know these feelings are controversial to express. But I feel they are important if we are ever going to get the NHS and policy makers to sit up and take notice of women whose bodies and lives have been deeply affected by childbirth injury and trauma. As long as women are expected to endure poor treatment while giving birth, these injuries will continue. Motherhood should not become an identity that disregards womanhood, and women should not feel afraid to speak out about the physical, emotional and psychological effects of birth injury."

Read the MASIC Foundation's full survey findings here.

Follow MASIC on Instagram: @masicfoundation
Facebook: @MASICFOUNDATION
Twitter: @masic_uk
If you're looking for support or to talk to someone about your experience, please call the MASIC 24h freephone Birth Injury Support Helpline 0808 1640 8333.

Jen will be coming back onto the thread on Tuesday (time tbc) to answer your questions.

[quote 1HappyTraveller]@Devondonkey

I don’t doubt your brother knows what is meant to happen in his trust. But to explain again.

The policy by which epidural doses are administered varies between trusts. In some places they are nurse/midwifery controlled so what you heard is not entirely correct/may have been misinterpreted.

I’m not saying he is wrong about his trust. I’m sure he knows the policy in his place of work. I am explaining that other trusts work differently. Including midwifery led epidural boluses. So you stating an opinion about one hospital as if it is fact across the country is incorrect.[/quote]
I said he keeps an eye on epidurals he places personally. That’s the absolute opposite of me saying this is a fact across the county.

I felt like I’d been in a bad car accident, then turfed-out i of hospital a hurry and responsible for new baby all in the space of 36 hours.No wonder I got PND

me too

With baby number 1 nobody spoke to me or talked me through the process or what was going on when I was in labour. Despite being an educated woman I didn't feel I could ask questions or say what I wanted. It was like I didn't matter and was just a commodity.

My baby's heart rate dropped due to cord round neck (common I know) suddenly I was being wheeled down to surgery (no explanation as to why just panicky voices) and then the consultant uses forceps first and pulls baby out. I'm screaming terrified and no idea what is going on.

I still recall a midwife "advising me" to keep my voice down as I'd get a sore throat! I look back and think - I'll scream and shout if I want and get a sore throat! Least of my worries!

Babies 2 and 3 I found my voice and made sure I wasn't ignored. I was lucky however.

That doctor with whom I clashed basically told me and the other women present that if you think about potential issues beforehand, like me, your birth will be harder, while those who go in unburdened will usually not have problems.

I bloody hate this type of mindset. It makes absolutely no sense, and basically tries to erase the value of women discussing our experiences by trying to blame those who have a hard experiences that they must have 'burdened' themselves with the thoughts.

I grew up being told stories of hard births. One thing my mother discussed her episiotomies (it was very standard when and where she gave birth) and how in the weeks post birth she would lean forward til she could put her hands on the floor to stop the stinging. I only had mild labia grazes with my first, but I remembered hers and others women's stories. Those stories and many I've heard & read since help me feel less alone even when I have a very different experience, they don't burden me.

I had a friend die in childbirth a few years before my first was born, so yeah, that risk was on my mind. It didn't cause me to have an enlarged placenta. Research into women's health is very slim on the ground and struggling for funds, and we need better than the woo of 'just don't think about the possible negatives'. I think some of these types of stories should be included in sex education for teenagers around pregnancy, they have value that keeps being denied.

I love this thread. I wasn't with severe bladder and bowel prolapses after the birth of my babies. I fought for 2 years (!!!) To be taken seriously by my GP and for her to refer me to a gynecologist. Upon inspection by the gynecologist he couldn't believe I had been left with no treatment whatsoever, and booked me in for surgery. I was in theatre for two hours to repair the damage, and recovery was very tough. Things are still not great and I will likely need another operation in the near future. If I could go back in time I would genuinely opt for elective C sections, or remain childless. In my honest opinion nothing is worth having to go through all of this, it's definitely fucked with my head and my mental health has really suffered for it. Everyone had me believe vaginal births are quick, and very easy to recover from which is clearly not the case. I would happily take any consequence that comes from a section over having my genitals butchered, and never being the same again for the rest of my life.

I was left with that should say

If you want to deliver babies, I think you should be qualified to do so in all eventualities, and as a result, and only those with doctor level of qualification should be allowed to.

Presumably then, we'll be sending obstetricians to attend homebirths too? I'm guessing your answer is no because you probably think homebirth is unsafe (although we know statistically it provides the best outcomes for low risk second time mothers and their babies).

I agree as a midwife that NHS maternity care requires root and branch reform, but medicalizing birth to the hilt is unlikely to provide the desired improvements and many women would be just as unhappy with a doctor-led system. I think we need to provide more choice and much more individualized care, rather than suggest that everyone give birth by CS. It's just as crazy as suggesting that everyone have a homebirth.

I agree with Treacletoots as well. Something has gone badly wrong with midwifery in the NHS. For sure it's impossible to deliver a good service when overwhelmingly understaffed (which can certainly be blamed on the government). However, it also seems like power struggles have been at the heart of some of the recent scandals. Whatever is going wrong owing to these divides between Drs and midwives needs to be sorted out.

There was a really good show at Edinburgh Fringe by a women's health physio about pelvic floors. She spoke about her own birth injuries, and was really funny about it, and then shespoke about the aftermath and how many women are affected and that was the first time I'd heard anyone mention the sort of trauma that I'd had after DC3.

You could tell that she really cared and that she was angry there wasn't better care for women. There should be more discussion about this stuff and I thought it was clever to use humour to put it across.

Also, thanks, MASIC for calling us "women" and not some offensive euphemism. We are not, as some charities seem to think, walking uteruses and I think the most female experience is probably having a damaged body from birthing our babies. Thank you for respecting us and helping us. God knows we need you.

NHS hCP here. This thread is so sad and so familiar. I agree that midwifery has a toxic culture and is not fit for purpose. After 3 ( complex) vaginal deliveries my DC4 was obstructed so late emergency CS, postpartum haemorrhage etc. Even so I would always choose CS over vaginal delivery if I were to have another one. For the simple reason that it is doctor and science lead. As a student on labour ward I heard midwives saying to women in 2nd stage labour ' you are not really trying', 'do you want this baby or not', and other patronising crap. When I heard this myself when in labour, it made my blood boil. Especially 4th time round, from a student MW, who told me I wasn't pushing right and needed to try harder. By baby 4 I knew how to push, so maybe it was time for the midwives to think of another reason why I was in second stage for an hour ( like the fsct the head had twisted and stuck in my pelvic rim)! The fact this came from a student shows me how this attitude is still being taught consciously or unconsciously and why I think midwifery is not fit for purpose. Secondly I recognise that if things were bad for me (articulate , HCP, member of staff, white) how much worse for others? The disparity of pain relief for black women in labour compared to white is shocking in its inhumanity.
Finally, I work with women who have faecal incontinence. They are usually in 50s, 60s, 70s and their lives are ruined by having to stay home or near a toilet so they can clean themselves up when they have an accident. They all have had previous vaginal deliveries, not necessarily 'bad' ones. Like everyone here they were sent off to get on with it after the baby was born with no attention to the pelvic floor and often were OKish for 10, 20 years after birth. But post menopause things get worse and we see the true cost of vaginal deliveries. These women are a hidden group, embarrassed, disabled, with no voice and no one reflecting back on the original cause of the problems. I agree with previous poster suggesting maternity umits should be responsible for the pelvic floor and wellbeing of anyone they delivered for the rest of the woman's life (ie to provide care, follow up and if necessary compensation). If maternity umits never see the outcome of their work then they can never improve!
Thank you for raising all this.

14 years on. Life changing birth injuries still affecting me. Midwives were horrible. Health visitors little better. Dismissive. Box ticking and disinterested. I eventually needed reconstructive surgery.
Mostly ok these days . Learned to live with it.
Yesterday, I had a smear test. I was terrified of the nurse - who, to be fair, was kind. I went home and cried. The thought of it still hurts.

This is definitely something that needs lots of funding and lots of support for women!
When I was pregnant with my daughter they picked up a mass on the scan that they thought was a blood clot outside the womb.
At about 20ww I started getting SPD
It got worse and worse and I was on crutches by the 30w. My referral was lost in the system so I never got to see a specialist.
When I delivered it took a week. I could feel the mass on my hip. My daughter was clearly stuck and no one would listen to me. I ended up having an emergency section.
3 months after my section I could feel my pelvis grinding when I walked. It was not good. I went private and discovered that my pelvis had completely dislocated: I went privately to have a metal plate to rebalance the pelvis: this has been in place for 10 years.
Several years later I discovered that I have stage 4 endometriosis. And that the mass on my scans was likely to have been a large fibroid or endometrioma. I have since had 4 surgeries for endo now I'm in my 40s despite complaining of fainting and heavy periods since the age of 14.
Due to the lack of care when I was pregnant the damage done to my pelvis and muscles surrounding it is permanent. Add the endo to this and it all adds up to me permanently being on pain relief. (Another thing that I have to fight to recieve without being made to feel like a junkie!) as a result of this I can only currently work 3 days a week due to the pain.

I hope that things vastly improve for women in the future!

I had my first baby 34 years ago and it was one of the worst experiences of my life (the worst being my new born son nearly dying due to undiagnosed congenital heart defects, but that's another story!). I was 25 and 5 foot tall, weighing 9 stone. I went into labour on the Friday night but was sent home as they were too far apart. I was re-admitted on Sunday as I was in agony. I was in pain for all of that time and it wasn't until the Monday afternoon that the Ob-Gyn decided I needed help, as my cervix wasn't opening properly. I am so lucky that I do not remember much of his delivery, as when they carried out the episiotomy, they also cut my cervix. My son was delivered with the cord around his neck and his arms crossed making the delivery very difficult. I lost a lot of blood but was not given a transfusion. It was noted as a post -partum haemorrhage.
On the Tuesday morning I was told to get up and have a shower. i tried to explain I felt really unwell but was helped to the shower room where I promptly fainted and had to be put back to bed and given a bed bath. The next day I was transferred to another small maternity hospital where I stayed for 10 days, still feeling awful. My G.P. visited on day 7 and asked if I was okay as he was concerned that I looked so unwell. My HB was 5.6 and I was sent home a few days later with iron tablets. My son was also not feeding well and by week 5, I was still bleeding, still in pain but told I was exaggerating. When he was 6 weeks old, he was seen by the GP and I was told he was fine and I was fine, but to reassure me, my son would be referred to the Paediatric clinic.
Long story short, he was admitted straight away with CHDs and had emergency surgery 6 weeks later. meanwhile, I was still bleeding a lot and in pain. 6 months after his birth, while I was sitting on the bed holding my son, I collapsed. Luckily there was a nurse there and I was admitted to A & E and told I was having an ectopic pregnancy. I knew I wasn't because we spent all our time at the hospital with our son.
I had retained placenta which was why I was bleeding and in so much pain. I was advised that if I wanted another child, not to wait too long as I would need a hysterectomy.
When my DD was born 2 years after my son, it was very different with Midwives only, but again after 3 days (while I was home) I had another post-partum haemorrhage after passing a huge clot. The GP called an ambulance and I was blue-lighted to hospital and had an emergency D & C which again revealed retained placenta.
I am now left with bowel and bladder incontinence, prolapses and other issues.

Presumably then, we'll be sending obstetricians to attend homebirths too? I'm guessing your answer is no because you probably think homebirth is unsafe (although we know statistically it provides the best outcomes for low risk second time mothers and their babies).

I agree as a midwife that NHS maternity care requires root and branch reform, but medicalizing birth to the hilt is unlikely to provide the desired improvements and many women would be just as unhappy with a doctor-led system. I think we need to provide more choice and much more individualized care, rather than suggest that everyone give birth by CS. It's just as crazy as suggesting that everyone have a homebirth.

I’m a little sceptical of any discussion of ‘outcomes’ because what are these ‘outcomes’? They seem to be primarily focused on whether the baby came out of the mother’s vagina or not, not how injured and/or traumatised the mother was - and that’s the point of this thread. Women with birth injuries from giving birth vaginally are swept under the carpet because they’re an inconvenient truth. Midwives and obstetricians don’t care, they wash their hands of you almost immediately. GPs don’t care, they’ve only got 5 minutes and traumatised post-natal women are ten a penny. Gynaecologists might care, if you’re lucky, but you’ll have at least a 6 week wait to see one.

I noticed my local hospital’s homebirth team boasting on Instagram recently of how 92% of its patients had vaginal births. Frankly that doesn’t tell me anything. I want to know what percentage of those women had third or fourth degree tears? What percentage felt they had good care in labour? What percentage are traumatised? What percentage have no pain, continence or other gynaecological issues on follow-up?

And whilst I think it would be incredibly unfair, and overly simplistic, to place the blame for all of problems in NHS maternity care at the door of midwifery, it seems clear that common ingredients in the many recent horrifying maternity scandals have been a) a pursuit of natural birth at any cost and b) toxic turf wars between midwives and doctors.

@JuliaMumsnet so sorry to hear about your experience

@PastelFlowerJelly I couldn’t agree with you more. I also had an elective section (on the NHS) & am so grateful that I did, & would do so again in a heartbeat. I chose that option after being shocked by some of the issues my friends were experiencing following a their natural births. I did have to insist, and had to attend an appointment with a midwife specifically to explain to me the benefits of natural childbirth for me & my child. I was definitely put under pressure to have a natural birth.

I was lucky - my friend is an obstetrician (not working/living in my area or in any way involved in my care). She explained to me that if I wanted an elective section I could have one, even on the NHS. She also told me that in her experience many of her colleagues in obstetrics chose elective sections over natural childbirth too.

I think it’s important that women are aware of all the options available to them, and many women are not aware simply because they are not told. Natural does not always equal better, and we choose to mitigate the risks of lots of ‘natural’ processes in other areas of modern day life. Women should be given the choice to do do the same when it comes to childbirth.

I one million per cent agree with everything @Treacletoots said.

Just to add to my story already posted, the damage caused to me was mainly as a result of the anaesthetist and registrar and not to do with the midwives. The most dehumanising treatment was from the anaesthetist (he was actually made to undergo additional training and apologise to me after the birth ‘incident’ was reviewed). My second birth was a home birth and whilst I wish that someone, anyone had paid attention to my previous birth damage to reduce the impact on me second time round - it was a wonderful experience and I am very grateful I was not in hospital. Anyone who thinks that being treated by doctors and automatic CS is the magic bullet here is deluded. What is needed is for the entire NHS to stop being a sexist institution which treats ALL women’s health issues like a grubby, weird, trivial inconvenience.

When i spoke to family abroad about my 4dt I was asked dont they scan you before delivery?
I actually didn't think about it but of course it would make so much sense.
My ds was hand to face presentation and shoulder dystopia.
A quick scan could have really prevented my injuries as I could have had an cs instead.
Anyone know anything about scans during labour?

Oh and just to add I have a letter recommendation from the gynaecologist that I should have an elc if I was to have another child.
There is no way a baby would ever leave my body that way again. Ever.

@teezletangler thanks for your thoughts. I do understand your point of view and think I do agree. There's room for both types of birth, depending on medical circumstances, the issue being that mother's rarely get any say or choice in their own birth experience.

I think this is down to turf wars, protectionism of 'their craft' being more a priority than the safe delivery of baby and best outcome for both. I don't see that changing unless midwives were more qualified to offer all birth types, so they wouldn't feel so protective over their roles. If there's an alternative to achieve the same results I'm open minded.

Essentially, women should ultimately have the choice of what happens to them and not midwives desperately hanging onto control at all costs, in what I can only assume is job protectionism. After all, if more women actively chose C-section, midwives would soon become obsolete.

Whatever the solution, it needs to happen, fast to save more women and babies meeting tragic outcomes because of a power struggle.

I was incredibly lucky to be offered a c section as DD turned breech at 8 months, but prior to that I tried on multiple occasions to request it but was dismissed blankly by every single midwife. That's not OK. I don't know of a single woman who had a vaginal birth who didn't suffer some kind of adverse outcome. That is utterly shocking.

I was lucky - my friend is an obstetrician (not working/living in my area or in any way involved in my care). She explained to me that if I wanted an elective section I could have one, even on the NHS. She also told me that in her experience many of her colleagues in obstetrics chose elective sections over natural childbirth too.

It's an open secret in the health service that many/most women who are gynae/Obstetricians choose elective LSCS as well as wives of obstetricians being encouraged to go for ELSCS. Someone should do a study so that there is a quantifiable statistic rather than heresay.

The NHS doesn’t have the resources, theatre space or surgeons for c sections to be the default birth atm. It would also make every subsequent birth high risk. I think there is a struggle just to give all the high risk women csections atm. Obstetricians, their wives and the wealthy are the precious few who can get the birth they want. Interestingly royal wives have been choosing normal birth recently. I suspect there is no need for them to request an elective csection as they will never be treated or damaged in the same way as women on this thread whilst attempting vaginal birth.

I am so sorry for everyone so affected on this thread.

“What did you expect? You’ve had a baby” was the GP’s charming response to my worry about my birth injury after a long labour with my first baby and no urge to push. Had my son three years later and the same thing - long second stage with no urge.

I was unable to go to the loo properly for a decade. My perineum was a tiny nub of scar tissue, the vaginal wall had pushed into the rectum and I had nerve damage. It was awful and the early years with my children were affected.

The NHS were great offering specialist gynaecological physio which helped a bit but I needed surgery and was told I would wait for years. Through work’s private medical insurance, I was able to get referred to a consultant who (while being careful not to refer to ‘childbirth damage’ as that wasn’t covered on the work group policy) changed my life. A relatively simple operation and I could poo again without pain! I can’t thank her enough. If only I had had that referral earlier I would have had a much happier life when my children were small.

When my sister-in-law went to the GP with a fourth-degree tear, he told her there was no such thing.

Oh God I just remembered something else. On the postnatal ward after my twins, a MW came to examine "my tummy". I thought it was one of those checks where they make sure the uterus is going back down to size.

She pressed firmly, asked if it hurt - I said no - she pressed harder and started pulling my waistband down, pushing all the time. When she was practically in my knickers, she stopped and asked "did you have a natural birth?"

She had assumed I'd had a CS and was pushing on my abdomen really hard right where the wound should've been. Also she had never offered any painkillers since I'd been on the ward.

It really gave me an insight into what women who have CS are meant to put up with.

The drs were no better though.

Interestingly royal wives have been choosing normal birth recently. I suspect there is no need for them to request an elective csection as they will never be treated or damaged in the same way as women on this thread whilst attempting vaginal birth.

Interesting you should mention that - I think you’re right - I looked it up and all three of the Duchess of Cambridge’s births were led by a consultant obstetrician (Guy Thorpe-Beeston) AND a consultant gynaecologist (Alan Farthing).