That's what matters

[ailbhe]

After the difficult birth of my daughter in April 2004, I was often told "Well, you have a healthy baby, and that's what matters." The people telling me this were well-meaning, otherwise intelligent people. They didn't realise that they'd just told me that I didn't matter. They'd have been horrified to think that they had. But... well.

So I went to the internet for support, and found the ladies in Babycentre's "Difficult Birth Debriefing" forum, and the various Livejournal communities, and, of course, the women reading my own online journal who had had difficult birth experiences. And many, many of them reported that they, too, had been told "You have a healthy baby, and that's what matters." And they, too, felt discounted, as though they had been told to shut up and stop complaining. Which we all had been, in fact. In a birth, the most important person is the baby, and that frequently turns into "the only important person is the baby".

This is about us, the women who had a perfectly healthy baby - but who were traumatised by the birth of their loved, wanted children, and who were unable to find the support they needed in their own families and communities to recover, because their families and communities had no idea that this could happen.

Listening to the radio while my daughter napped one afternoon, I heard an item about a charity which sends surgeons to Africa to repair women who tore badly during childbirth. These women are left doubly incontinent, in constant pain, ostracised by their communities and their families because of the shame of fecal incontinence, unable to work effectively because of their condition - their lives are in ruins. The charity spokesperson described it, and the Radio 4 presenter was, appropriately, appalled. "Would this happen in the UK or the US?" she asked. "No," the charity spokesperson replied, "It would never happen in countries like this because we can offer c-sections."

I cried all afternoon, after shouting, hopelessly, at the radio: "It happened to me! It happened to me!"

I know women who were told that they had postnatal depression - women with extensive experience of depression, who knew that the fear and flashbacks they were experiencing were not depression, who did not feel depressed, who felt a normal range of emotions except for panic attacks, anxiety attacks, vivid flashbacks which often included physical memories, literally reliving the pain of a traumatic childbirth, nightmares, day-dreams so vivid they were almost hallucinations. My mother was the first to suggest I might have PTSD. I brought this home diagnosis to my sympathetic GP, who was pleased and relieved to have it - in spite of specialising in obstetrics and gynaecology it had never occurred to her that a woman could suffer post-traumatic stress disorder as a direct result of childbirth.

Women wrote to me after I told my journal that I'd had this diagnosis accepted and why. One person commented, "I am not post-natally depressed, I am post-natally freaked out!"

Women wrote to me saying "Thank goodness you've written this - can I find out more about it? I thought I was crazy."

In hospital for repair surgery, my bed was next to that of a woman who had suffered a traumatic birth 23 years previously. She had never been able to get over her fear of pregnancy and childbirth enough to have sex again. Her marriage had broken up over it. She had been unable to visit her only child, a daughter, in hospital when her grandchildren were born. For 23 years, she thought that there was something wrong with her that was her fault, that was unfixable unless she could fix it alone.

I was lucky - I have enough personal experience of being slightly mad that I knew when there was something seriously wrong that required outside help.

What about everyone else?

(If you have experience of this, I'd really appreciate your input, because I want to write about this a lot more than I have, and a lot more coherently, and a little more impersonally, though obviously I can only be authoritative about my own experience).

Comments

[richtermom.livejournal.com]

I had a relatively "normal" birth. As I hoped, I did it without pain meds, but since my contractions stopped after three contractions and the water break (kind of like those "how many licks does it take to get to the center of a Tootsie Pop? One! Two! Thrrrrreee!" commercials from before you were born), I was pumped with pitocin starting at like 7 a.m. I tried getting "things started" by walking the halls at like 4 a.m, and nothing jump started. I was rather annoyed at their playing fast and loose with pitocin levels; I'm pretty sure they were planning on having me give birth after the doctor's clinic hours and before the 24 hour window was ended -- about a three hour window. Which was pretty shitty, frankly.

I don't actually remember many details. The contractions were pretty hard much of the time, and I blacked out a lot. There was a little tearing, an episiostomy, a couple stitches. Weeks after the birth, I still couldn't remember things, even when prompted by the doula. And, again, mine was still closer to the "normal" end of the spectrum.

I cannot imagine the hell you've gone through.

Okay. I have a small, slight inkling. In early puberty, I had day surgery on a labia. There was a growth. The doctor let my mom stay with me in the room. She refused to believe me when I told her that I could still feel, that the anasthetic wasn't working yet. Finally when he started the stitches, I stopped feeling down there. Years later I asked her WTF was she THINKING, and she insists she never heard me say it hurt, she just thought I was scared.

Bullshit, Mom.

My perception of the "But your baby is healthy!" response is that people need to snap away from the blackness and pain they were just confronted with and instead try to find something, anything positive, please let there be something positive. And there's not much more positive than Miss Linnea. She sounds just wonderful and delightful.

Your experience, your trauma, your pain, they aren't to be forgotten because your child is healthy and fabulous. But can you imagine how bleak and terrifying post-partum and even now could be without her? But your doctors, the medical people over there, they should be focusing on making you well. Making you more functional and helping you regain strength. Their procrastination is unforgiveable.

[mollydot.livejournal.com]

My perception of the "But your baby is healthy!" response is that people need to snap away from the blackness and pain they were just confronted with and instead try to find something, anything positive, please let there be something positive.
I agree. I, and I imagine every other woman who's ever had a miscarriage, got the opposite positive response - at least you're healthy, that's what matters.

And there's not much more positive than Miss Linnea. She sounds just wonderful and delightful.
And I agree with this too!

[richtermom.livejournal.com]

I think it's that people don't like to leave things open ended with just, "I'm so sorry." We want to say or do something to make you feel better. And unfortunately, we rarely hit our mark.

[barakta]

I haven't had birth trauma or anything as severe as you have, but I have had my fair share of good and bad medical experiences over the last 25 (nearly 26) years. To date I think I have had 43 general anaesthetics - we have lost count of the precise number.

Around the time of my 20th anaesthetic I was given a premed which I was known to react to. The excuse of the nurses at the time was something along the lines of "We can't get a new medicine written up, and we won't take her down to theatre without premed". My mum let me have the premed as I needed the surgery (some ENT thing I think).

Instead of being sedated by the premed I ended up hyper and confused as I couldn't understand the world around me due to the fragmented and skewed sense of time. The anaesthetist and his crew decided to stick cannulae into me while stopping me from seeing what they were doing. I couldn't understand what was going on so started to struggle and scream.

After at least four people held me down they did manage to get me sedated. At which point the doctor refused to operate because I had been so naughty - as we know medics still pull this crap *grrr*.

Since then no anaesthetist has been able to get cannulae into my veins while I am conscious. It just doesn't work, my "wonderful looking veins" collapse as soon as a needle goes near them. Anaesthetists have accused me of lying and insisted that they get to try for themselves. It doesn't help that they won't use my hands, so use my feet which I can't see while they're poking around. Every single time they have had to concede defeat and let me go out with the gas.

I used to go down quite happily without a premed and have the gas on a regular basis. On one occasion I agreed to a premed which zonked me out - but left me distressed and agitated upon my return to semi-consciousness. I later found out that I'd been given 3 pills which was the dose for a large male person at that time I weighed about 6 stone. Overdose much!? The anaesthetist who overdosed me on premed didn't fuck with me the next time we met.

I don't know why my veins collapse. I am not particularly consciously fightened of needles I've had vaccinations and pricktests with no problems at all. I even watched the school nurse do my BCG which freaked her out something chronic. I can only assume that the veins collapsing is extreme physiological response which I can't control.

I have never had to have blood tests which required needles in veins. I do not know if I would get vein-collapsage or not. I guess I ought to find out sooner rather than later, so I do at least know. I might be able to persuade a good plebotomist to give me time and space to feel safe before they start stabbing me. I may even be able to persuade them to use my hands instead of my feet.

I am lucky my parents always believed me when I said something was 'wrong' so I knew I could speak out.. On one occasion a few years after the trauma and in the middle of a series of ops on my hands when I was about 6 I refused to let them give me a general anaesthetic while they removed stitches from my hands.

I think my mum understood the lack of control that any patient, especially a child has. She trained as a nurse in the 70s and said you never really know medicine till you've been on the receiving end of it. She used her medical knowledge as a power to fight the beurocratic and often insensitive systems and refused to let petty rules get in her or my way. In one hospital where parents were not ever allowed to accompany their child to theatre we had permission for her to accompany me AND meet me in recovery much to the disgust of several medical people.

I haven't been through anything as traumatic as you have and I am angry for you and sad for you that this has all been such a fuckup. From the lack of communication, and information to the level of idiocy that you have faced trying to make people fix some of the problems you were left with.

[tammylc.livejournal.com]

My experience wasn't traumatic, especially not compared with what happened to you, but I did get the whole "at least your baby is healthy" thing a lot. I had been planning to have a homebirth, and ended up having to have a scheduled c-section when my breech baby wouldn't turn. For me, it was worse in some ways knowing about it in advance - I was prepared for the chance that something might go wrong during my homebirth and I'd have to be rushed to the hospital, but a planned c-s was the complete and utter opposite of everything I'd been hoping for my birth. I had to do a LOT of processing and dealing both before and after he was born. There were a number of people who said rude and insensitive things to me ("at least your baby will have a round head," "I've had two c-sections, they're no big deal"). People (even my husband) had a really hard time understanding that I needed to mourn the loss of the birth I had hoped for, even at the same time that I was looking forward to and (later) celebrating the arrival of my baby - the two things were completely separate and not dependent on one another.

[ailbhe]

I felt sort of similarly when I was told that all future births would have to be c-sections - "elective" c-sections hahahaha - in that I felt cheated of the birth experience I wanted, that is supposed to be best for the child, and lots of people rushed to assure me that c-sections weren't so bad, really, instead of saying "That really, really sucks."

Because yeah, it's not so bad, really. I mean, we could all die in childbirth like we used to do. But it still really, really sucks.

Seen http://ailbhe.livejournal.com/2004/10/25/ ?

[tammylc.livejournal.com]

Seen http://ailbhe.livejournal.com/2004/10/25/ ?

Yes indeed. Nod, nod.

I can certainly relate. In the end, it was my *choice* to have a c-section. My homebirth midwives would have attempted a vaginal breech delivery, although they didn't recommend it. And although most people were supportive, I received a certain amount of "crunchier-than-though" flak from women who said they'd do an unassisted breech birth at home before ever consenting to a c-section.

Liam is almost certainly going to be my only child. So I still get sad that I'll never get to experience labor or delivery. It really, really sucks.

[tin_kitten.livejournal.com]

Hi there, I hope you don't think i'm a stalker :-) I've been reading your journal for a while now as we have some LJ friends & comms in common. I have PTSD caused by the birth of my son 18 months ago. I know what you mean about the healthy baby comments aswell (I wanted to kill everyone who said that to me, I found it so condecending and it still makes me mad) but I can't be more help than that cause I still cant talk about it or think about it.

[k425.livejournal.com]

I didn't go through what you went through but I did have some 'stuff' for a while.

I planned a homebirth, with support from OldBloke and from the community midwives, but after 2 hours of pushing it was obvious that things weren't going to go as planned. I was too swollen for the midwives to do an episiotomy, YoungBloke was still not far enough along to make an epi worthwhile and I was too tired to push any harder any longer, so an ambulance was called.

I had some of the same stuff you did, I think - catheter, big epi all the way from front to back, recovery problems (but not to the extent you've had). But I think I was luckier with the staff. And one of the best things that happened is that Debbie, my favourite midwife, took me in her arms, held me, and apologised that I hadn't had the birth we'd all wanted. And that made me feel rational and allowed to mourn and validated.

Of course later some people did say the "that's what matters" thing. Including my mum. But it didn't matter then, because by then my loss had been validated and I'd been able to work it through.

I still find myself very occasionally thinking "next time..." or "if only I'd done..." but now I can remind myself more rationally that there won't be a next time and I couldn't have done anything different, really.