Tuesday, 3 March 2015

Angels and Demons, Some Thoughts On The Morcambe Bay Scandal


I've been reading about the Kirkup inquiry into the deaths of mothers and babies at Furness hospital with great sorrow today. I wish I could also say I was shocked but I'm really not. I've not read the full 209 page document but one part of the executive summary really struck me.

"...working relationships were extremely poor, particularly between different staff groups, such as obstetricians, paediatricians and midwives; there was a growing move amongst midwives to pursue normal childbirth ‘at any cost’; "

There are many many wonderful midwives out there. Midwives who work tirelessly to care for women, to make their births safe and joyful experiences and who fight to improve services despite being overworked and under staffed. I've been lucky enough to be cared for by some of them. But in all the years I have been researching health issues around childbirth I've regularly seen two particular ideas being spread that worry me.

The first is that  "normal birth" ie. vaginal birth with no interventions or pain pain relief, is best. Targets should therefore be set to achieve more of them, individuals and entire services should be judged by the proportion of their births that meet these stringent criteria. Midwives (and others) who encourage women to have "normal births" are lauded. I've never been comfortable with this. Of course interventions are rarely welcomed and an unmedicated vaginal birth will be the best possible option for many women. But there are now many kinds of birth, both by choice and necessity. Sometimes the best possible birth is planned caesarean section, sometimes it needs an induction to get it going, sometimes a women may just decide that she is in dreadful pain, and as there is a really good, safe way to make it stop, she might as well use it. When so much effort is focused on promoting and achieving only one kind of birth there is surely a risk that all the others will be neglected. When people, especially midwives, publicly heap so much praise on this one kind of birth and endow it with benefits far beyond those that are scientifically proven, is it any wonder that many mothers who don't meet these expectations feel like they have failed and perhaps let down their babies? The best birth is one where mother and baby feel safe and well cared for, where both emerge healthy and there is no lasting harm, physical or emotional, to either of them. That can't always be achieved vaginally and drug free.

The second idea is pretty much a meme amoungst advocates of midwife led natural birth, here's just one example:


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Essentially, midwives are wonderful, nurturing women. Doctors are cold and uncaring men, devoid of human sympathy. They have no interest in mothers or their babies, and just want to get those births over and done with as quickly and clinically as possible (without any chance of getting sued). According to this belief, midwives and doctors aren't two medical professions working together , they are two utterly opposed ideologies. 

True, there are plenty of great midwives and a lot of rather aloof and callous doctors, but no profession is made up entirely of angels or demons. There are some pretty damned unsympathetic midwives out there. I've been on the receiving end of some of their "care". I've also met some lovely doctors, including two male obstetricians who showed enormous sensitivity when I burst into tears during their busy clinic and took great care to reassure me and give me options about my care. Not only is this "Midwife good doctor bad" meme inaccurate it's also does a huge disservice to the great many women who turn out to need care from a doctor. In the UK, a woman with a low risk pregnancy will normally only be cared for by midwives, both before and during the birth. But what if she turns out not to be low risk?  She will most likely already be worried about whatever that risk is. If she's also been taught to believe that the doctors she will have to deal with will be uncaring and even dangerous, how much more fear will that place on her? How much harder will it be for that woman to work with her doctor, and make informed decisions about her care, if she is expecting a fight before they even meet?

Sadly, at Morcambe bay these two ideas seem to have run to their extremes. Instead of working with doctors the midwives set themselves apart. They held the ideal of normal birth so high that lives were sacrificed to it. The individual midwives were not the only ones at fault of course. The doctors should have spoken out but they didn't and at many levels problems were ignored and hushed up for years. Mistakes happen, but these mistakes were systematically hidden away and so they continued to happen and more and more families faced going home with empty arms.  We only have the Kirkup inquiry because of the astonishing bravery and determination of some of those families, such as James Titcombe, who's baby son Joshua died of sepsis after a shocking lack of care which was then covered up. 

I absolutely stand with those who want to improve women's experience of childbirth. I owe a huge debt of gratitude to everyone who fought to move us away from the "do as you're told, doctor knows best" attitude of the past. I know that there are many wonderful midwives and that "normal" birth is the best possible birth for many women. But perhaps it's time for a little reality check. Midwives aren't all heroes, they are human beings after all. Exalting them as something apart from everyone else and from other medical professions might feel nice, "empowering" even, but it helps no one. Not the midwives who want to be great and what they do and who need to be able to learn from mistakes. Not the doctors, who have to deal with women who walk in their door already scared or angry with them. And certainly not the families, who need a kind and knowledgeable team to guide them through they most physically and emotionally demanding events of their life. 


SBx

Wednesday, 25 February 2015

Have Your Kids Had Their Smallpox Vaccination?


Have you vaccinated your kids against smallpox?

No? 

Why on earth not?

Oh, wait...



I've not given my kids the smallpox vaccine, I doubt anyone reading this has - why?

Because there is no more smallpox. Barring a few samples in two high security labs the disease simply does not exist anymore. Look it up on Wikipedia, it's talked about in the past tense. Measles is an infectious disease. Smallpox was an infectious disease

Why is it gone? Vaccination.

We don't have to decide if we should vaccinate our children against smallpox because we have absolutely no need to vaccinate them. We don't have to agonise over the possible side effects or if the vaccine may contain "toxins" etc. etc. We don't have to weigh up the personal choice not to vaccinate our own children against the greater good of protecting those who can't be vaccinated. We really don't have to think about it at all because previous generations did that for us.





They got vaccinated, they vaccinated their kids. It wasn't easy and many people had concerns about it. Doctors and health workers had to go out to the remotest parts of the world, through civil wars and famines to stop the last few outbreaks of the disease from spreading but in the end smallpox simply had no where left to go. There was no one left for it to disfigure and kill and so it died itself. In December 1979, just a few months after I was born, the whole world was declared free of smallpox.

We owe those previous generations an enormous debt of gratitude. So do our children and every generation to come. 

I starting thinking about this after reading this article on the WHO's reaction to recent measles outbreaks. I wrote recently about the Disneyland outbreak but I've only just heard about a bigger one in Germany which, tragically, has resulted in the death of an 18 month old boy who wasn't vaccinated. Overall the death rate from measles is thought to be around 1/1000. In Germany it only took 583 cases before a child lost their life to a preventable disease.

I also hadn't realised that the WHO had set a goal to eradicate measles from Europe and central Asia by the end of this year. A goal that now looks almost impossible. 

There is often a lot of talk about herd immunity in vaccine debates. If everyone who can have the vaccine does then the disease won't be able to spread to those who can't, such as new born babies, or those who have lost their immunity through disease or cancer treatment. But we tend to think of this as a very immediate thing. The current crop of small babies, people undergoing chemo this year. 

What the history of smallpox shows us is that we could do far more than that. If our generation pulls together, looks at the science and understands that the vaccines are very safe and clearly not linked to autism. If we ALL vaccinate our kids then it's not just them or their baby siblings and sick classmates who will benefit. It's their own children and everyone else yet to be born. 

If we do this now, our kids won't come to us concerned about vaccinating our grandchildren against measles or whooping cough or polio. They won't need to make that choice. Those diseases will exist only in history books.



Vaccination queue, 1962

SBx

Monday, 23 February 2015

Tech For Mums, The 13 Best Smart Watch Apps For Mums/Moms


So, now for something completely different.

Smart watches are part of the new wave of wearable tech, essentially it's like having a smaller version of a smart phone screen sitting on your wrist and connected to your phone by bluetooth. I wrote a while ago that I thought they would be ideally suited to women and especially Mums. Well, geek that I am I saved up my pennies and got one, I've been using it for a few months now and people have started to ask about it so time for a review (look away now if you have an iphone, you'll need to wait a bit longer for a compatible watch.)

Here's the context. I'm a working mum with a very chatty 5 year old and a very active 2 year old. Armies have gone to war with less stuff then I leave the house with to go to the park. I rarely have pockets big enough to comfortably carry my smartphone so if I'm out it is probably buried in the bottom of my enormous bag. If I'm at home I'm probably doing about 3 things at once and dealing with a constant barrage of requests or squabbles, organisation breaks down, stuff gets forgotten. A new watch can't fix that but with the aid of these apps it can help:

Best Apps:



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1- Find My Phone
Free, with paid for add on options
Hands down this is the app I use most on my watch. A couple of taps and you can make your phone ring so you can find it. It's not world changing technology but it is really very useful. It'll also make the watch vibrate if you are going out of range of the phone connection. Handy for stopping you forgetting your phone when you go out.






2- Google maps
Free
I walk a lot, I have a hopeless sense of direction. Google maps on my phone has really helped with this but waving an expensive smart phone about while making it very obvious you are lost feels like an open invitation to thieves. It also isn't very easy if you're also pushing a buggy or controlling a rampaging toddler. With the watch integration I set up my route on the phone then chuck it in my bag. Every time I need to take a turning the watch vibrates and shows an arrow of which way to go, looking at it is just as quick (and discreet) as checking the time.




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3-Glympse
Free
This app lets you share your location with someone for a fixed period of time, they don't even need to have the app themselves. It works on the phone too but the watch app makes it super quick and easy to send a preset "Glympse". My husband and I use this all the time now, it's great if we're both racing to get to nursery pick up or wondering if it's worth holding dinner back for the other to get home. I also find it reassuring to know that someone can check where I am if I'm coming home alone at night, something which would be good for parents of older children too and it's less intrusive than tracking their every move.



4- Text and Email notifications
Built in
Not really a specific App but oh so handy. Waiting for an urgent message and annoyed by digging out your phone after five separate unimportant notifications? New emails and texts simply pop up on the watch screen with a little vibration to let you know. If it's important you can read it there if it's not simply swipe it away, it'll still be on the phone for later


5- Call notification and reject
Built in
Similarly any incoming phone calls will come up on the watch face with just a subtle vibration. Great if you are somewhere where it's inappropriate to have a phone buzzing but you still want to be able to receive that urgent call from school or nursery. Anything unimportant can be rejected on the watch and if you do want to answer, accepting the call via the watch buys you a few extra seconds to dash out of the room and and/or hunt in your bag for the phone.


6- Voice Texting
Built in
 The android wear watches use Google speech recognition technology so you can send a text to someone in your contacts without touching anything (or indeed an email or tweet) this has come in handy of any number of occasions, many of them involving pushchairs or hideous nappies. The voice recognition isn't 100% but it's pretty good and no worse than predictive text!



Cover art6- Google Keep
Free
Keep is a very basic note taking app. More highly specked options such as Evernote also integrate with the watch but I prefer the simple sticky note style of Keep. As with the voice texting this uses voice recognition so you can make quick notes even if your hands are full (or filthy).









7- Timer
Built In
"ok Google, set a timer, 5 minutes" you say that to the watch, you get a timer. Simple as that. Good for cooking, (timing experiments if you're me) and possibly the naughty step!



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8-Google Fit
Free
There are lots of fitness tracking and step counting apps available for smart watches. I particularly like the simplicity of Google fit which allows you to set achievable daily targets such as one hour of activity eg. walking or running, a day. It provides a little bit of motivation to get out and actually walk the school run when I'm feeling like being lazy and jumping in the car.






Cover art9-RunKeeper
If you are after some more serious exercise then there are a host of apps to for that too. I have the Sony SW3 which is the only one of the current devices to have it's own built in GPS. With the runkeeper app running on my watch I can track my run distance, time, speed etc without having to take the bulky phone along. I can also still listen to music using bluetooth headphones as the phone has 4G of memory. On other smart watches it would be necessary to carry the phone along still but it could all be controlled from the watch and while I'm running I also find it much easier to flick through music or check run times etc on my wrist rather than having to wrestle my phone out of it's pouch. Runkeeper is a little buggy on the watch at the moment but they are actively working on that in the mean time it may be worth giving a few others a go. Some of the other watches also have a built in heart rate monitor that some people might like to use when running.Free with paid for pro version



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10-Sleep as Android
Free trail with paid for add ons
Sleep oh sleep, how I love you, how I miss you. This app has been around for a while on phones but required you to have your phone in bed with you which I was never very keen on and as it relies on measuring movement it was easily thwarted by a memory foam mattress or a fidgety partner. None of these things are an issue if you use the watch as the movement sensor. The app will monitor your sleep cycles, to see how much deep sleep you actually get and the smart alarm system will try to wake you up when you are in a light sleep to avoid that awful alarm clock shock - unless the kids get there first of course! I've only had this a few days so can't comment on how accurate it is yet.




12- Wear Camera
Free
This neat little app is a remote control for your phone camera. Open it and the phone camera will turn on, tap it to take a picture.


13- Google
You can put a web browser on the watch although the screen size limits it's usability, but voice activated Google searches are one of my kids' favorite things right now. My five year old asks my watch questions when we are doing homework, my two year old just like to shout "Polar Bear!" at it as this brings up a picture.



So This is my favorite toy of the moment, it's not going to revolutionise anyone's life but it really does come in handy at those times when actual hands are trying to juggle the world.

The downside for me (apart from the price of course!) is that at the moment none of the watches on offer are particularly attractive. Most go for either a sporty look or try to imitate a classic gents watch both of which are just a bit meh as far as I'm concerned. But there is the option to swap the straps on my Sony watch so hopefully a few prettier ones may emerge and the upcoming iphone has unsurprisingly made more of an effort in the fashion stakes. That said a couple of people have commented on liking the look of mine even without knowing it was a smart watch and of course being able to change your screen whenever you like is nice, my kids particularly like the animated Minion screen. My hope is that I'm not the only geeky mum out there who'll be helped out by this new technology and that if it becomes clear there is a strong female market the manufacturers will put in more effort to making the things appealing.

Finally a couple of FAQ's

What's the battery life like?
This varies between models but if I turn my Sony SW3 off overnight it will easily last 2 days without a charge. Certain things like using the inbuilt GPS will drain it faster. It also charges really quickly. I've not actually timed this but certainly less than 2 hours for a full charge which is good if you're using a sleep tracking app.

Is it Waterproof?
Again this varies but the SW3 is waterproof enough to go swimming in, and I've tested this out at a toddler swimming class!


SBx

Note - I got no freebies for this review, I paid for the watch and any apps myself, I'm just doing this in the hope it'll catch on and more great apps and pretty straps will be made!






Tuesday, 17 February 2015

Post Natal Care; My After The Birth Story



This post is mostly for the #MatExp folks who I have been trying to keep up with on twitter (it really wouldn't have fitted into 140 characters!) Heads up other readers this isn't a very happy or positive story, although thankfully we were ok in the end. If you are expecting a baby and anxious about postnatal care, you may want to skip this post, but don't go away there will be more ranting soon!

*****

I started thinking about this after seeing a new report which shows that women in the UK spend less time in hospital after giving birth than our counterparts in any other EU country. This made me wonder- is this a bad thing? It is if women are being rushed out before they are ready just to clear the bed for the next person. A generation ago it was normal to spend a week in hospital after the birth of a first baby. Now, if it was straightforward, you could be home within hours. But many women are very glad of that, so perhaps the UK's short hospital stays should be welcomed?

Overall I suspect both aspects are at work, but for once I don't want to critique a study or the media coverage of it. I'm going to do something that is much harder for me and tell a very personal story about my own experience of postnatal care when my first child, MissE was born. I've touched on this before but never managed to put it all into text. It's long and upsetting and to be honest it's something I try to avoid reliving. I also know that I could have done things differently and spoken up for myself more, but at the time I was tired and traumatised from a very difficult birth and just wan't thinking clearly.

As a first for this blog I'm also going to put up a linky at the end and I really hope that other people will be able to share their own stories of post natal care,  good or bad.

So here's my story:

Tuesday
I arrived on the postnatal ward of a busy London hospital at some point on a Tuesday morning. I was oblivious to the time by then, days and nights had blurred together as the straight forward, natural birth I had planned (and foolish assumed was pretty much guaranteed), had taken me from wallowing in the birthing pool of the midwife unit to, eventually, lying shaking and terrified on the operating table. 

I do know that my daughter was born by emergency caesarean at 2.33am. Afterwards I was taken back to the delivery room for a few hours. I hadn't slept since the previous Saturday night, my husband had done a little better but was still extremely tired. He dragged out a sort of school gym mat that was propped in the corner and fell asleep on the floor. My beautiful new daughter dozed peaceful in her little plastic crib next to me. I was utterly exhausted, I should have slept but I couldn't. I'd been convinced of the very worst when my baby was whisked away, silent and unseen behind the blue surgical screen. But even once she was sleeping safely beside me I couldn't relax, I couldn't let go of the fear that something might happen, that someone needed to stay awake and watch her. At some point one of the midwives who had looked after me earlier in my labour popped in to say hello as she started her next shift. She'd been home, probably seen her family, slept, eaten. This was a whole new day for her but for me it was just a continuation of a timeless blur, I barely recognised her and couldn't speak to thank her for her help, whenever it was that she had helped.



I don't remember much about that day after I got to the postnatal ward. I was wheeled down on my bed, unable to move. The staff on the delivery ward all cooed over how beautiful miss E was with her full head of dark hair. I kept wondering if this was really my baby, I already loved her fiercely but how could something this beautiful have come from my ugly body? Had some switch been made behind that blue screen? I told myself that that made no sense, but still the doubts crept back.

I do remember that night though.

For a while it seemed that everything would be fine, I was the only person in a four bed room and at some point the lights were dimmed and I lay down, with one hand resting protectively on the tiny crib, and started to drift into sleep. I looked at the time on my phone, amazed I'd been awake for so long. An hour later I was woken up by voices and the clanking of equipment as another mother was brought into the room. I never learnt this lady's story. My best guess is that she was readmitted as her baby was jaundiced and had to be put under a lamp. Whatever had happened, the mother was clearly in desperate need of help herself. She spent the rest of the night pacing up and down the room, rambling and shouting, I couldn't make out what she was saying or in what language, I had no idea if it was directed at her baby, herself or maybe at me. With hindsight I know she was harmless, that I should have tried to help her but that's not what I thought at the time. At the time I felt extremely vulnerable, I still couldn't move and I was terrified of this "crazy lady"* and what she might do to me or my baby, the baby I needed to protect. So I did what I could and lay awake and vigilant all night. Once, a midwife came in and asked her to be quiet, but then they left us alone for the rest of the night. I should have called them, asked them to do more for my sake and hers but I was too scared that she would over hear me complaining and then take her revenge once the midwife's back was turned. Our room was at the end of the ward, out of the way and I had already learnt that the call button could wait twenty minutes for a response, if anyone came at all.

By now time had definitely returned and I was acutely aware of it. I watched the minutes and hours tick past, snatching glimpses of it on my phone screen, hidden under the bed sheet. Until it was just about morning and I thought it would be ok to call my husband. To shake him out of his much needed sleep and ask him to come back in the moment visiting hours began.

Wednesday
I remember a little more of my second day on the ward, there were family visitors, all delighted to meet the first member of a new generation, I felt the need to tell them all about her birth but I slowly realised, everyone was there for the baby. Not me. At some point we discovered that I still had a catheter in and the bag was full so it was removed, along with the cannula that had been tugging at my veins for days. I desperately wanted a shower but wasn't sure if I could, was it ok to get the scar wet? Would I even manage to stand in the room alone? Was I allowed? I managed it in the end, trying hard to get clean without actually looking at my body, trying to leave no trace of my blood in the shared bathroom.

By this point I'd been moved to a busier room, I couldn't help overhearing the conversations with the lady in the bed opposite. She had a new baby, just like me, but she had no where to take him home to and was waiting for a bed in some kind of hostel. How dare I complain in the face of that? What right had I with my lovely husband and nice flat to demand more time of the staff?

I remember the next night vividly too, far too vividly. Once again the lights were turned off and partners ushered out. But this time the ward stayed noisy. In the bed next to me another mum talked loudly on her phone, her TV blaring. She was told to keep it down but paid no attention. The bed opposite was briefly free until a new occupant arrived, her baby had just been born by emergency C section and her shocked and exhausted expression mirrored my own. As she was brought in I was sitting sideways on my bed, half naked, trying desperately to get a decent feed into my uninterested baby. I remember the look of horror on the face of the new woman's partner when he saw me. One of the midwives noisily changed the bed sheets, clanking the sinks and bins right next to me. I could feel again by now and the pain was growing. I pressed the call button to ask for some pain relief but no one came. Later I tried again, to get someone to help me lift my baby so I could feed her but again no one came.

Eventually the adults on the ward grew quieter just as the babies grew louder. I managed to flag down some pain relief but it wasn't enough and eventually, reluctantly, I was given a morphine tablet. I don't know if it was that or just the shear exhaustion but suddenly I began to hallucinate. At first it was just a little movement in the corner of my eye, down on the floor near the door - a mouse? Surely there wouldn't be mice running around the ward? If nothing else it was spotlessly clean. Then slowly the creature took the form not of a mouse but a moose, a cartoon moose that I used to draw at school. I knew it wasn't real but that only made it all the more terrifying, was I loosing my mind now? Would I soon be the "crazy lady" pacing the ward?

Still my baby wouldn't feed. For two days I been told this was terrible, or absolutely fine.  That there was something wrong with her mouth or she just needed a rest. But I needed to feed her, I had to make her ok and do something right for her, but she just wouldn't, what was I doing wrong? I wanted help but couldn't ask for it, no one seemed interested, every bit of advice I'd had contradicted the last and besides, I really shouldn't make a nuisance of myself.

Eventually it all became too much and I allowed the tears come. But it wasn't the quiet restrained little weep I had expected. It was the gulping, sobbing, unstoppable cry of a small child, I knew everyone could hear me but once I had started I couldn't haul back any control. After a while one of the midwives came over and asked what was wrong. For a moment I thought she would help me, that she would do something, so my baby would feed and I could sleep. Or she would just just tell me that yes, what I'd been through was horrible and I had every right to feel shocked and upset by it. But no. She told me sharply that I must stop crying and making a fuss or I would spoil my milk and not be able to feed my baby at all.

Then she left.

I should have called her supervisor, I should have complained and asked for help. But I didn't. Instead I listened as the supervisor (who I think was informed of the incident by another of the mums) and the midwife argued about her behavior in the corridor outside. The midwife then stomped off leaving the rest of the staff chatting about last night's TV. The supervisor did briefly come over to check I was ok but didn't mention the incident. Neither did I, I knew better than to ask for help now.

Not long after that the baby screaming really kicked off, my own alternating with one of the others in the room so that it was a constant din. I had to get out of there, I staggered to the desk and asked if there was anywhere I could go to be alone with my baby and away from the noise. Someone waved in the direction of the ward lounge, but it had dazzling automatic lights that left me feeling exposed so I asked if there was anywhere else and was pointed down the corridor to to a little room used for expressing milk.

I spent the rest of the night in that small, beige, rectangular room. There were two big machines and a plastic chair. MissE slept on and off in her crib or in my arms, though I was scared I might finally fall asleep and then drop her. Mostly I sat on the plastic chair, alone in the dark, checking off the minutes and hours on my phone until morning. When I thought it would be getting light outside I went back to my bed. No one checked on me, no one noticed I'd been gone for hours.

All I knew now was that I needed to leave. Yes I had had major surgery and my baby wasn't feeding well, but there was no way either of us could recover there and I doubted my body or mind would hold out for another night. I lay on display in my bed as the doctors and midwives did their morning ward round, discussing me as if I wasn't there, ignoring my attempts to join in the conversation about my body and it's failings.

It took hours and a lot of nagging but eventually, against the advice of the medical staff, I left. Shuffling painfully down the corridor, not fast enough to get to the room where my baby was having her first checks, but I made it out, using our new pram as a walking aid.

It was Thursday afternoon, I'd slept for a total of one hour since the previous Saturday night. I had been through an exhausting labour and emergency surgery, followed by two nights awake and afraid. I felt broken in every way and now, I had to go out and become a mother.



*******

Thankfully this was all more than five years ago now and that precious little baby is now a vibrant, chatty schoolgirl. We moved a few months after her birth and so her little sister was born at a different hospital and, although the postnatal stay was noisy, I was cared for with warmth and respect. My husband was able to stay with me all night and one of the midwives happily took my baby away for a cuddle so I could get some rest. I woke up hours later to find a my little one, wrapped cosily in a blanket my Aunt had made for her, fast asleep in the crib next to me.

So what would make postnatal care better? In an ideal world, we would have individual rooms, so mothers had some privacy and only their own baby's crying to deal with. There would be plenty of midwives popping in to check everyone was ok and partners would have at least a good comfy chair to spend the night in.

Of course that may be impossible for many hospitals but there are things that could be improved for very little cost. Simply checking if a woman has any questions about what to do now would be a start. Is it ok to shower? To eat? Should she be up and walking about or taking it easy in bed? Is it ok to lift the baby? Even a really big baby? What about pain relief? When a birth hasn't gone to plan a woman may be completely unprepared for the aftermath. I did virtually no research into C sections as I never thought it would happen to me, so I had only old, outdated, second hand information to draw on.

Consistency is also a big thing, I got completely contradictory information about breast feeding, my very large baby simply wasn't interested at the start. Some of the midwives were unconcerned by this, others terrified me with the possible consequences of letting her sleep, unfed for more than two hours at a time.

Then there is kindness, that costs nothing, not even a great deal of time. The midwife who told me I would spoil my milk should not be in that job, I don't care how busy or stressed she felt, there is no excuse for that.

Second time around, the hospital was just as busy as the first, the staff no doubt under just as much pressure but what really made the difference was just a few snatched moments of kindness and empathy. A quick smile and acknowledgment that I was a person, not merely the occupant of a bed, or the vessel from which a baby had been removed. Even when resources and time are acutely limited surely that can be achieved everywhere?

SBx

* I don't use the phrase "crazy lady" lightly, and I certainly hope it doesn't cause anyone any offense, it is just the best way I can think of to describe my perception of her at the time.



Tuesday, 3 February 2015

"Three Parent Babies" Science, Hope and Parliament



Just sometimes, I feel very proud to be British, which isn't very British I know. Today is one of those days because MPs have voted to allow scientists and doctors to create so called "three parent babies".


As a scientist myself I find this fascinating; the great challenge to better understand our biology and use this knowledge to prevent horrible diseases. But as a mother of two small children, having read the stories of some of those parents who have lost children to these diseases, I also see the hope and heartbreaking urgency in today's news.

There has been a lot in the media about this today but I've not yet seen much in the parent blogging world, so I thought I would chip in. There have been a few misleading stories and I worry that some people may be concerned about what is actually being done so I hope this will help a few people out and not read too much like a school biology class!

The Science bit:

Firstly, the whole "three parents" thing isn't really accurate. The third person is more like an organ donor than a parent, only no one has to die and the benefit is felt for generations. In fact, what they are donating,  their mitochondria, are part of a group of tiny structures in all our cells known as organelles. Each organelle has a specific form and function within the cell, just like the organs in a body. The mitochondria are the cells' power stations and so they are especially important in parts of the body that use a lot of energy, such as the heart and brain. But just like organs, the mitochondria don't always work properly.

Mitochondria are curious little things. Most of your body is built using blueprints cobbled together from the DNA of both your mother and father. But mitochondria contain their own, separate little bit of DNA and come only from mum. Your mother's mitochondria, in the egg cell that would become you, were the sole ancestors of those that now power every cell in your body. They pass from mother to child, generation after generation, almost unchanged. But when there is a fault, this too is passed down and the results, in those power hungry organs like the heart and brain can be catastrophic. I read today about a mother who lost seven children to mitochondrial disease. Seven. I can't even begin to imagine that.

Today's decision in parliament should allow doctors to try a new form of IVF treatment, where they replace the faulty mitochondria in the mother's egg cell with healthy ones from a donor. If it works, the baby will be free of mitochondrial disease and so will any children they go on to have. The baby and all those future generations will also carry around the tiny chunks of donor mitochondrial DNA. Inherited genetic material from someone who is neither their mother or their father and this is what some people have objected to.

The Arguments Against.
As far as I can tell the arguments against trying this technique fall into two categories. Firstly there is the "Slippery Slope" fear that this is the first step towards genetically engineered designer babies. I have very little time for this argument in this particular case. The genetic material, the DNA, that is being donated won't make the baby smarter or taller. It won't give them blond hair or help them win an Olympic medal. It will just stop them dying horribly and needlessly. The techniques involved aren't even the same as those that would be needed to make a truly designer baby.

The second concern is that we don't yet know if this is entirely safe for the babies. A lot of work has already been done and it seems very promising but nothing in life is completely safe and we can't yet be sure there won't be unforeseen problems. The thing is, the only way we can be sure is to try it. There comes a point in all medical advances where we have to summon our courage and have a go. There was once a first heart transplant, a first IVF baby, without them the thousands who have followed could never have benefited. The idea of taking risks with an unborn child, of them being part of an experiment, feels repellent, but the alternative is to step back and do nothing while those babies continue to be born into suffering, and shrug our shoulders as couples are forced into childlessness. To me, if we have a hope of changing things for the better, then, on balance it would be more repellent not to even try.

The Politics
As a scientist and a mum I am delighted that MPs voted in favour of this today. As someone who has deep concerns about much of what our politicians do, I'm also a bit relieved. The church argued against this decision (although it's clear this wasn't the view of everyone involved) as did some MPs from most political parties and I can see how the idea may seem unnatural and disturbing if you don't understand it fully. But most MPs did manage to grasp either enough of the science, or of compassion for the families involved to vote yes. After some of what has gone on in this parliament, especially with our health service, I take some comfort from that.

So well done, for once, to the MPs and even more so to the parents who have campaigned and the scientists an doctors who have got us this far. Our soggy little island punches way above it's weight when it comes to science. We've made huge contributions to understanding life and to improving it. This next step is brave and not entirely without risk but I think we should be proud of taking it and of the hope it can give to families all over the world.

SBx

Thursday, 22 January 2015

Some Important Lessons From Disney - About Measles and Vaccines




This will be quite a quick post as I am short on time and a lot has been written on the subject already (by much better and more important bloggers than me, see below). But it's a news story that has had very little attention in the UK* so I wanted to share it: Over the Holidays there was an Outbreak of Measles at Disneyland in California, the disease is still spreading. To date at least 70 people are known to have caught the disease and that number is growing all the time (It was 57 when I started drafting this post). Understandably this isn't big news over here but it is a story that provides us with a few valuable reminders about why we have vaccination programs:


1- Measles isn't a mild disease.
The most recent stories I've seen about the Disney outbreak say that a quarter of those infected have had to be hospitalised. Mild diseases do not put 1 in 4 people in hospital. However, I don't want to put too much emphasis on that figure as I'm not sure how reliable it is. I could quote all the well established stats about the risks of death, brain damage pneumonia etc. but you can find them in plenty of other places. What I'm going to do instead is give you one of those totally unscientific anecdotes:

I had measles as a small child. It was f***ing hideous.

Thankfully I don't remember it in detail and I came out with no long term harm. But I do recall being in bed, feeling hot, miserable and covered in spots, with my even littler sister ill beside me. My Mum says she had to put sunglasses on me and darken the room as my inflamed eyes couldn't bear any light**. Even if none of the victims of the current outbreak suffer any complications, that's still 70 people going through that misery needlessly, if the reported hospitalisation rate is true then things are much worse.

2- Measles is really really contagious.
Someone incubating Ebola but not yet showing symptoms could spend days at Disneyland and they wouldn't pass it on to anyone. It's a terrifying disease but you can only catch it by direct contact with the body fluids of some already suffering (or dead) from it. Measles, by comparison is a world champion at spreading itself about. You can catch it from someone without ever even meeting them. If someone incubating measles, but showing no symptoms sneezed in a room and then walked out, you could go into that room two hours later and catch the virus from droplets still hanging in the air. So it's hardly surprising that it has been passed on in a theme park crammed full of thousands of kids, many of whom are from the local area which has a high rate of-guess what? Middle class parents who read some stuff on the internet and now won't vaccinate their kids. Looking at it that way, the only surprise is that it didn't happen sooner.

3- This isn't just someone else's problem.
It would be pretty easy to think: "bloody stupid Californian hippies, risking their children by not vaccinating." Then move on, feeling comforted and probably a bit smug that it doesn't effect us, we're smart, we vaccinate our kids, our kids are safe.  Certainly most of those involved in the outbreak were unvaccinated (or hadn't had both doses) and most of them were unvaccinated because of their or their parents choice. Most, but not all. Disney attracts young children and with young children often come even younger siblings. Several of the victims are babies who were simply too young to have been vaccinated yet. There are also a few fully vaccinated people who have just gotten really really unlucky.

The MMR vaccine is very effective, with 2 doses 99% of people will be fully immune. But that does leave that little 1% who for some reason don't produce a good, long term, immune response. If everyone has the jabs that doesn't matter at all, the virus won't be able to spread and will never get anywhere near that 1%. But put 50,000 vaccinated people in an amusement park with one unvaccinated carrier of a disease as contagious as measles and you don't need to be all that great at maths to figure out what might happen.



So yeah it's a long way away and my kids are fully vaccinated, but that doesn't mean I can just ignore it. I feel really sorry for all those suffering the measles right now. Even, perhaps especially, those kids whose parents' grasp of biological reality is so poor that they left their little ones exposed to a potential killer. But I'm also angry that those same parents got to choose what happened to other people's kids, to those babies and that 1%. I'm angry that it could happen here, where my kids are and that somewhere, at some point, there will be another pointless, preventable death.

Ok so that wasn't very short and it got pretty ranty at the end there, as I said, it makes me angry. If you still want to know more about this, here are a few good reads from over the pond:

Tara Haelle in Forbes
Tara Again ('cause she's ace)
Orac at Science blogs
The NY Times Motherlode

12.2.15- Edited to add - I try not to call anti vax parents stupid, I know it's a complex issue and all, but this song did make me laugh:




SBx

*Of course while I was writing this the Guardian beat me to it.

**It's not entirely clear why I wasn't vaccinated, this was before the MMR was introduced but there was a single jab available (I'm not that old!). My parents are lovely and not anti vax conspiracists, so my best guess is that it got missed in the confusion and worry caused by a big scare over the whooping cough (pertussis) vaccine that was going on at the time.

NB: Disney seem to be responding very responsibly to the outbreak. Several staff were among those infected and they are now taking steps to ensure all staff are vaccinated and immune. They are also telling unvaccinated kids to stay away.


Saturday, 17 January 2015

Caesareans, Sex Lives and the Good Old Daily Mail.


I was wondering what to write next on this blog, I had a couple of posts in mind before Christmas that I never got time to write, but they are hardly topical now. However, thanks to the NCT twitter feed I have something new to be cross about:



It's a startling figure, I knew the C section rate in the country was high but 52% of women choosing major surgery just because of worries about their sex life? That's pretty incredible, so I did a bit of digging and it turns out there were some recent news articles I missed about this. The main one (and do sit down for a minute as this may come as a shock) is from that great defender of truth, reason and equality - The Daily Fail Mail.

I'm just going to call this as I see it right here; the Daily Mail piece is inaccurate, misleading, sensationalist, racist and deeply misogynistic.

First let's deal with the facts, or rather the torturing of them. The 52% figure is the overall C section rate in Brazil. Unless every single Caesarean performed there is due to fears about future sex lives then then the Daily Mail headline is clearly utter nonsense:

More than half of pregnant Brazilian women choose Caesareans over natural birth 'to protect their sex lives'

(Also, on a slightly pedantic note, 52% of births isn't the same as 52% of women, but anyway)

Even with this explained though, the 52%  figure is still quite misleading as it hides a huge disparity in the mode of birth between those using the state system and the millions of women in Brazil who have private health care. In state funded hospitals about a decade ago the caesarean rate was comparable to the current UK rate of about 24%. But since then it his climbed and some figures put it as high as 40%. But even this seems low when compared to the staggering 84%* of births that happen by C section in private hospitals. 

This disparity between public and private is important as it hints at another reason for the extreme number of surgical births in the country: Hospitals can make more money out of C sections. They require more people, more equipment and longer stays than a straight forward vaginal birth. They can also be scheduled to occur during office hours and the hands on bit for the doctors is usually pretty quick. No doubt this isn't the only reason behind the high levels of c sections but it makes rather more sense than most Brazilian women caring more about their sex lives than their babies birth! 
*****Edited to add: for more on this see the comment below by Eloisa, who had first hand experience of this in Argentina which has a very similar health system*****

So where did that claim come from anyway? Was there a big national study of women's attitudes to birth which turned up the huge numbers basing major decisions on concerns about getting a bit, *ahem*, stretchy? Nope, as far as I can tell the whole thing comes from a comment made to a newspaper by one individual, Vera Fonesca, Director of the Brazilian Federation of Gynecological Associations who said that: 'The Brazilian woman is concerned with her sexuality and fears that giving birth will alter the perineum, which is a myth.' 

Oh and since we are on the subject of myths, contrary to what the Mail article says: - 

THERE IS NO WORLD HEALTH ORGANISATION RECOMMENDED CAESAREAN RATE! 

There used to be one, until they admitted that some bloke just made it up and there was absolutely no evidence for it! - They dropped this rate in 2009! For how many more years am I going to have to say this?

and breath....

Actually, no, lets not calm down, lets get onto the racism and sexism that weaves it's way all over this story. 

First off, the Mail must have been so very pleased that this is happening in Brazil! Try to think of a stereotypical image of a Brazilian woman- most likely she is gorgeous. Tanned, toned, with enviable breasts covered in the tiniest of beach bikinis or sparkling samba costumes. She oozes sex appeal, she's a feisty, passionate lover. So of course all Brazilian women are like this, and it's not surprising that for more than half of them, the biggest concern of impending motherhood is getting back to all that wonderful sex, right? I wonder if the Mail would be so interested in the C section rate in Belgium?



Here's another question - Why is it inherently wrong for a mother to be concerned about her own sex life anyway?

Certainly if the sole reason for a huge number of c sections is false fears about  future sexual enjoyment then that is a problem. But in that case caesareans aren't the cause of that problem, they are the symptom. The problem certainly won't be fixed by demonising those who choose surgery. Those fears aren't entirely false anyway. Vaginal birth usually causes no major, lasting, harm to the mother. But there may be reasons for some women worrying about how a vaginal birth might effect their future sex life. Many women suffer a torn perineum during birth and that could cause difficulties in the short term (although bravo if you feel like having sex at any point in that "short term" anyway). In rarer cases vaginal birth can lead to longer term harm and/or issues with incontinence, which could impact on a mothers sex life. These things are rare but they exist and it's perfectly reasonable to consider them. 

Sometimes the damage isn't physical. Some woman experience considerable psychological trauma during birth and go on to develop PTSD. Where the traumatic birth involved a lot of internal examinations and interventions, especially if the woman feels she was forced into these and didn't truely give her consent, then future intimacy can become a huge trigger, sending the woman straight back to the stress and terror of the birth and leading her to avoid sex altogether. 

On a related note, women who experienced sexual abuse earlier in their life may well want to avoid a vaginal birth and all that can go with that so as not to dredge up old traumas, something which could also effect their future sex life too.

All of those are reasonable excuses, but why do we even need excuses?

Let's think about a completely different decision, one that involves only men's bodies for a change. If a man is found to have early signs of prostate cancer he can have surgery or other treatment to reduce the risk of that cancer progressing. But the cancer may never progress anyway and the treatment can damage a mans sex life. So some men decide to avoid the surgery and accept the increased risk of cancer rather than the risk of those side effects. I'm yet to see a headline declaring that "Men Risk Cancer To Protect Their Sex Lives". Why should there be? It's a perfectly reasonable decision. Prostate cancer mostly occurs in older men, most of them will have children already but that doesn't mean they don't still want to have a sex life - so why doesn't the same apply to women? Our society has mostly moved on from the idea that young men should "spread their wild oats", while women save themselves for their wedding night, but mothers as sexual beings still doesn't seem to be something we are entirely comfy with. Mothers are supposed to exist in a constant state of grateful self sacrifice for their offspring. Still wanting to be able to have a decent shag with the kids Dad doesn't really fit in with that.

So does the Mail think that 52% of Brazilian women are so dim witted and sex obsessed, that they would still choose needless major surgery, even if they had accurate information about how unlikely it is that a vaginal birth would harm their sex life? Or are they just plain horrified at the thought of a woman, a mother, making that a consideration at all?



None of this means that I think a c section rate of 84% or even 52% or 40% is fine. Speaking as someone who has had two C section and a very long labour I know from bitter experience that the surgery is not an easy option! I really don't believe that huge numbers of Brazilian women would choose a C section without a good reason, if they were actually given decent information and not put under pressure by hospitals. 

But (like the WHO) I don't think there should be any ideal caesarean rate. Contrary to what some of the news stories are saying, modern caesareans are very safe for both mother and baby. Especially when they aren't done in a rushed emergency. So if a woman looks at all the evidence and decides she wants one, even if her reasons seem frivolous to some people, you know what? Her body, her choice.

Mostly I'm annoyed with the Daily Wail, but the paper seems to actively troll it readers, so they are probably pleased about that. But what about the NCT tweet that got me into this rant in the first place? I really want to give them the benefit of the doubt, best case scenario it was a poor choice made by an individual manning the twitter account and in need of something topical. But the NCT has often been criticised (and not just by me) for being anti caesarean and propagating unevidenced nature-knows-best type beliefs. They always counter that they support all parents' choices and give only evidence based advise but if that is the case why promote a "news" story that is so very lacking in evidence and which is sexist, anti choice and sensationalist too? As I say I'm inclined to go with the best case scenario that it was just a silly mistake, but at worst it suggests that some of those old judgmental attitudes and beliefs still linger in the organisation. Come on NCT, you can do better than that.

SBx

*I've actually seen a variety of figures for both public and private in various newspapers but I'm going with the most commonly used, which is also the highest as I haven't been able to find a good original source - if anyone has one, please let me know!