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.

My friend a few years on nearly died and lost her womb after a similar experience there with induction and over use of drugs/ roughness- so it’s not even like I can it was unlucky

The lack of postnatal support for women is truly shocking. For birth injuries and for caesareans - what other open abdominal surgery can you have where there’s no follow up at all? I find it baffling that anything related to birth is seen as unimportant when similar injuries by any other means would need intensive care, physiotherapy and support.

I remember how I felt after my caesarean where one of my twins almost died - during pregnancy all these HCPs were interested and supportive, as soon as they were born I ceased to exist. Even with a traumatic situation and twins in nicu, there was no support. I was on my feet spending all day every day in nicu from the next morning. I got very ill, and was expected to take it all in my stride.

There are currently some early adopter postnatal pelvic physio pilots happening around the country which I hope will bring in change.

I got involved in my local Maternity Voices Partnership when my twins were almost 1 as I needed to feel I could help inform change in the system. But we have such a long way to go.

I think maternity services need a drastic change, I mean this in relation to attitude towards women and a lack of empathy which I have experienced first hand. In addition I feel my experiences were lacking in any form of medical opinion, no one was willing to share any view with me in my care, which I believe is because everything is a ‘personal choice’ these days and there is fear of backlash.
I have had 2 ELCs, the first due to placenta previa. I was really upset by my first experience and for months looked back and shuddered, it totally put me off having another. I sadly don’t look back on this experience with the same happiness as I did with my second child. The problem was that despite it being major surgery the staff were little to no help. I was wired to the moon and asked if someone could get Me water.. was dealing with poor screaming child and feeling really unwell..light headed and so on.. was rudely told it was a self service area and told to walk the length of the corridor to get it. I think the problem is.. and my belief is that staff become desensitised to the difficulties/struggles women have after birth as they experience this in the ward every day.. it’s very much a get on with it yourself attitude. However the worst part of that experience was that I was trying to breast feed, baby cried constant and my anxieties were telling me she was starving so I asked on several occasions for a bottle.. I was met with many comments like ‘ keep trying it’s early days’ yes and I’ve changed my mind. It took for me to Be in floods of tears the next day before the gave me a formula bottle. The next day I was starving and asked for macaroni and chips as that was options, I was told not allowed the chips with macaroni and if I wanted the chips then I was to choose fish as that’s what they are for LOL felt like a child. Was back in hospital 10 days later with c section infection, no big deal compared to my experience post birth.
Second ELC.. theatre and recovery staff were great. However the labour wards were full meaning I was in the recovery ward for nearly 12hours, I wasn’t fussed about where I was but it seemed to mean a lack of communication or attention to my care. When I moved into labour ward that night I had to buzz to ask if someone was going to help me get up as I had been lying in bed for 12 hours post section.. the response was ‘has someone not got you up already, should have been up after 6hours’ yes I know this which is why I was pushing to get help. Also all night I felt I had to remind staff to do things, example of this is that they forgot every single time to do Baby’s heel prick test. Annoying.
There are some great staff out there and my experiences are not all negative but from pregnancy to birth I have often felt treated like a child, get on with it, that’s what women do attitude and it’s disgusting in this day and age, surprised it has been the case so long.
Oh one more thing I am 32 years of age.. asked to fill out a feedback form on maternity care when I was about 36 weeks.. done so .. and I was actually given a sticker for my efforts.. you know how children get stickers at the dentist, yeah just like that

My waters had broken and I was clearly in labour, contractions so painful that I was lying on the floor of the hospital in pain. The midwife was rude, and sent me home saying I wasn't ready. As soon as I got home, the contractions almost knocked me out; had to get ambulance to nearest hospital, almost fully dilated. No painkiller possible except gas&air. Eventually epesiotomy and ventouse delivery.
Then the horror of repeated postpartum haemorrhaging over the next 2 weeks, in and out of hospital, twice lost 40% of my blood and had blood transfusions, once I very nearly died, blood pressure had plummeted. By then DH's paternal leave had ended and I was on my own, in terrible shape, with my little one. Even now years later, my pelvic floor is shot. Midwives and health visitors were completely useless (often wose than useless) throughout, in my experience.

I should add that the horror and trauma of the childbirth experience led us to change our original plans of having more children, to sticking to one not having any further children.

Reading the experiences here have had me in tears.

My waters broke but I had no contractions so I was told to go into hospital to be checked over. I was offered an internal exam, to be swiftly told "actually let's not do that because it might stop you going into labour naturally" and was sent home. 2 hours later I was having constant contractions, and DP was on the phone being told "too soon, don't bring her in yet". We eventually decided just to head in against their advice.

When we arrived I was still having constant contractions and was told I needed to lie down on the bed for them to examine me, which was excruciating. I asked for pain relief only to be told I couldn't have it until I was 4 cm and without lieing down they couldn't check. In the end I had to grin and bear it, and they found out I was 7cm.

I was given gas and air, then it came to pushing stage. I had a student midwife who just kept saying "do what your body tells you", with no other guidance, except to stop using the gas and air. My enormous baby was born in just a few pushes.

Following this, the midwife took a quick glance me and explained I would need surgery. A male doctor came in, and explained that he would need to touch me to see the extent of the damage. I told him he wasn't going anywhere near me without pain relief, so he sent the midwife off for some gas and air. Before the midwife had come back, he proceeded to try again to examine me, without consent. I told him in no uncertain terms where to go and he didn't even apologise, just stopped what he was doing and waited for the midwife to come back.

In surgery they discovered it was a 4th degree tear, and the surgeons and anaesthetists were fantastic.

Afterwards, the anaesthetist was very clear that I was to take the Oramorph as and when I needed it, which I thought was odd. The first night in hospital I felt really supported, despite no food being available for me (allergens!). The next day was a different matter. I was constantly reminding the staff for my pain relief, and only actually managed to successfully be given Oramorph by the overnight team.

After several days in hospital (because my baby was ill) I was discharged, and received a letter in the post for a follow up appointment in 3 months time.

The community midwife had to be pushed to check my stitches, and even then only had a quick glance. At my 6 week check the GP checked the baby, not me. My entire pelvic floor was numb, and as a result I was incontinent. I eventually found out I could self refer for pelvic floor physio, which I did, and which was great.

No one ever talked to me about my mental health. I still can't remember much of my DCs birth. I cried every single time I thought of it, and then again on his birthday.

Several years on I'm pregnant with my second. I had to have (private) counselling to even entertain the idea. Thankfully the hospital have been great about approving my ELCS, but as others have said, they're not without risk.

Had DD right at the start of the first covid lockdown, bad 3rd degree tear. Left hospital hours after spinal had wore off ‘lessens the chance of you catching covid!’ Couldn’t get anyone to check stitches - rang HV she told me to use a mirror to check them. They got infected, ended up back at hospital a week later, they forgot to give me a blood transfusion, was told to make a complain via PALS - none of my notes were signed off by any consultant / midwife. Notes showed I had a blood transfusion so no leg to stand on. Year later still having issues with scar tissue and prolapse, can’t exercise as everything makes prolapse worse. Absolute shit show ☹️

The absolute worst part of my 4dt experience was being told by the surgeon repairing it that it was obvious from my anatomy that I was going to tear badly and should never have attempted a natural birth. So, the whole thing was entirely preventable. I'm still under consultant care 11 years on, and that's just for the physical effects. The cost to me is huge but the cost to the NHS is also broad and ongoing. From an economic standpoint alone this should be tackled seriously, even if you ignore the human cost.

I'm about to put my hard hat on and seek treatment for PTSD, no idea if I'll get any help. I had to leave my job in the NHS because I was being re-traumatised every time I had to work on anything connected to maternity services. These impacts should be tracked and managed, not ignored.

Apols should have said vaginal birth, understandably it's still very upsetting to think about. Like others, we stopped at one child when we had wanted two or three, in part because I was told an ELCS would not be available to me on the NHS and in part because I was told I couldn't access any further surgical repair until I had completed my family. I'm still waiting for the additional surgical repair that I need.

For birth injuries and for caesareans - what other open abdominal surgery can you have where there’s no follow up at all?
This is what makes me angry. I had a c section which is major surgery, then I NEVER had a further checkup by a qualified doctor or consultant. No physio, no revision (because it’s a mess due to being an emergency). Nothing. The midwife had a quick look and took the stitches out. She said “ooh that’s a mess, that’s never going to look normal again”. I said ok what will the NHS do about it? NOTHING. No wonder I felt scared and abandoned. At the 6 week check the GP checked the baby not me. My stomach is a mess and imo needs surgery to revise it, but nobody cares and the GP won’t entertain me.

So many awful heartbreaking stories. 💐💐💐💐💐💐💐💐💐💐

I had a tear and terrible incontinence for months, it made me very depressed. I thought it would never go away and all the midwife said was to do pelvic floor exercises which I'd been doing for months anyway. In the end I bought a device online, like a weight you place inside yourself before doing the exercises. Things improved with this. Another angle on this is if you've had a terrible pregnancy. I had severe hyperemesis and was in and out of hospital, I literally couldn't move my head without vomiting and couldn't keep sips of water down. I vomited when I was induced too, and as soon as my baby was born. Then I was sent home to look after the baby, totally exhausted of course. No one has ever checked on me after my severe sickness. At one stage I seriously thought I was dying and frankly felt so ill that I wouldn't have cared if I had died.Im also left with a split muscle so I always look about 5 months pregnant. I'm 8 years on now! It's the total lack of care that I couldn't believe. You're just supposed to be able to cope with all the trauma, no one helps you. My hyperemesis was psychologically damaging to me, no question. I was abandoned with that.

I had long Labour baby and they had to turn baby and they didn’t attempt it just once and I still remember his hands because I thought how they are huge, baby turned but was starting to get distressed and may need c-section.

Didn’t want c-section as was petrified of that.

I don’t know at what point what say am not destroyed as felt like human glove puppet.

Baby born by ventouse.

Have 3rd degree tear and sometimes can feel something hard lump when wipe.

Also have to stand at weird angle to insert tampax it not straight up but it’s tilted.

I certainly can’t jump up & down. I wish just take everything out, it’s heavy. Too late that ever get anything do, I’m age when menopause is waiting.

I'm going to be pretty controversial here but I think midwifery is no longer fit for purpose.

Where else would you actively choose a professional who is only partly qualified for the job at hand, and as a result is also totally biased and do everything on their power to not call upon those more qualified to help even when it's totally necessary?

Expectations of birth have drastically changed, alongside the medicalisation of birth, for the better. How many babies are saved by C-section that wouldn't be an option with just a midwife led birth.

Why would we accept the opinion of someone who isn't qualified to carry out the procedure, in this case a C-section, who is then clearly biased against it. Mine wouldn't even discuss the option!

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.

The midwives I experienced were almost all unsympathetic, unhelpful, uncaring and should never be allowed near people, let alone women at their most vulnerable.

You wouldn't ask a nurse to carry out a routine surgery, just in case it goes smoothly, so why the hell are we still accepting this for delivering babies. ?

[quote 1HappyTraveller]@Devondonkey

“ My brother’s an anaesthetist and he says he always has to keep an eye on epidurals after he’s put them in as the midwives will reduce the dose (they’re not qualified to touch the bloody things). He says they should be sacked.”

The policy by which epidural doses are administered varies between trusts. In some places they are nurse/midwifery controlled so what you’ve heard is not entirely correct/may have been misinterpreted[/quote]
He’s an anaesthetist is the hospital, so he’s pretty clear on what should and shouldn’t be happening.

I have two prolapses and an extremely short perineum following a 2nd degree tear. I'm very upset about how it restricts exercise options, I ride my bike now for cardio mostly. The GP didn't refer me for physio as I had asked, and wouldn't investigate the prolapses. I was left to my own devices so I bought a Kegel8 and the MUTU exercise programme myself which has helped loads with incontinence (I'd recommend MUTU). These things should come as standard on the NHS as they are in France. It's despicable that the UK doesn't care about women's health.

@Treacletoots

It may be controversial but given that toxic turf wars between midwives and doctors - with women and babies caught in the middle - appear to have been at the heart of some of the recent NHS maternity scandals, with utterly tragic consequences, I don’t think it’s an unfair observation.

I had two very uncaring midwifes. Both births they seemed to be trying to actively discourage me from coming in as they didn’t think I was progressing very quickly and would therefore take up a bed unnecessarily. Even once in to hospital they tried to send me away again. I had to insist both times that I needed to go to hospital and both times I delivered without any pain relief as there wasn’t enough time and birth felt like it was rushed and not managed properly.

FortunesFave
You were very very lucky if you managed to get your two elective sections on the NHS.
I hope your daughters have the same luck as you

I had a similar experience to many here. Back to back labour, refused adequate pain relief, rough, uncaring and incompetent midwife. I was begging for an epidural. Third degree tear, no follow up care. One child in large part due to the trauma.

It's a disgrace and I agree midwifery is not fit for purpose. I'm sure we get midwives rather than obstetricians because they're cheaper.

I'm glad there's a campaign about this.

We need to stop not talking about it.

I just remember the classes given before the birth and the books given out by the midwifes and there is never any mention of the trauma that can be experienced in birth. Kegels were recommended to stop urinary incontinence but nobody talks about prolapse or any other severe injuries that can occur. They need to tell women more about the reality of prolapses.

[quote MissChanandlerBong22]@Treacletoots

It may be controversial but given that toxic turf wars between midwives and doctors - with women and babies caught in the middle - appear to have been at the heart of some of the recent NHS maternity scandals, with utterly tragic consequences, I don’t think it’s an unfair observation.[/quote]
Yep, I agree with Treacleboots too.

I have always thought that the difference between Midwifery and Medicine as similar to the difference between homeopathy and medicine.

There seems to be some sort of issue with inferiority so that as a profession Midwifery is quite protectionist and antagonistic to what they perceive as 'male science' It seems to me that this will to protect their profession, and to legitimise it is central, and of course this means Midwifery pursuing natural birth at all costs, including huge harm to women. From my own experience and reading it seems that very often the agenda of a natural birth comes before any other consideration, and that when it becomes obvious there are problems they are very reluctant and slow to involve obstetricians. Is it possible that delays in getting another opinion, unwillingness to involve obstetricians until absolutely necessary contributes to poorer care, more trauma and more injuries?

@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.

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.

I remember parts of it, but lots blanked out, I was put on a drip against my wishes ‘to speed things up’ and the midwife ,wow, she was a prize. She told me off for ‘ making silly noises’ and to ‘stop being soft’ ‘ not trying hard enough’ whenI was in agony this went on for hours. To make matters worse she was so rough examining me it was excruciating. I wildly batted her away and started screaming at her to get off me!

A doctor came in and examined me , Straight away she said I needed theatre, (DS’s head was in the wrong position/stuck) I needed forceps or CS, Also when the doctor examined me I barely felt a thing, which makes me think midwife either didn’t know how to do it properly or she was being deliberately rough.

That doctor saved me and/or DS, I dread to think of the outcome if she hadn’t intervened.

Aftercare in the ward was minimal, it wasn’t even though they were run off their feet, they seemed to spend plenty of time huddled together gossiping!