Care in a perfect world ~ Epilepsy Blog Relay

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

I 've been thinking long and hard about what to write about for the blog relay and I've decided following on from the Royal College of Midwives awards last week I'm going to look at how care of women with epilepsy especially through pregnancy and early motherhood needs to improve.

 

Becoming a mother is a huge decision for anyone, it's a daunting prospect the idea of bringing a tiny person whose completely reliant on you into the world and helping them to become a valued member of society.

 

Then add epilepsy to the mix which brings with it so many additional complications, the risks that come with the epilepsy medication, the fact no matter how well controlled your seizures are you are labelled high risk and the fact you are going to be looking after someone so vulnerable while also suffering a condition which is so unpredictable. It's a scary thing.

 

So you'd think that with so many issues to think about there would be good support systems for women with epilepsy but unfortunately often there is very little support.  Most women are being looked after by a general neurologist who probably doesn't even specialise in epilepsy and who won't be able to see them in months. There are areas of the country where there aren't epilepsy nurses and with only one epilepsy midwife in the whole of England paid for just 6.5 hours a week who can women with epilepsy talk to about starting a family? 

 

It leaves women with epilepsy pretty alone in this scary situation and so they turn to google and online forums, which are a great resource to share experiences but one which should be backed up with real life knowledgeable support. 

 

It's little wonder I speak to women and they are really frightened to start a family, they are being told about the risks of their drugs on babies with little support in all the other issues epilepsy places on pregnancy. We need better support for women or we're going to be going back to a time where women with epilepsy feel they can't have a family due to their condition which is not the case.

 

Risks of medication

 

At the moment there is quite a lot of media out there about the risks of  epilepsy medication in pregnancy and rightly so. Women should be given ALL the facts and the fact so many women were not told about the risks of their drugs and the impact they could have on their unborn child is disgusting.

 

But I fear things maybe going too far the other way, without the right support this information is extremely frightening for women.  I have spoken to women on some of the safer medications who are terrified and considering not having a family because of the risk and you ask them who they have spoken to about it and it's no one. They have read the risks online and have tried to see their neurologist but have to wait months for an appointment.

 

Please don't get me wrong women should be given the facts about there medication and the impact on an unborn baby but they should also be able to talk their worries through with someone so they can weigh up the joys of childhood with the risks of the medication and ways to reduce the risks.

You can find out more about the risks of epilepsy medications here.

 

The pitfalls of being labelled 'high risk'

 

Having epilepsy automatically makes you a 'high risk' pregnancy whether you are having convulsive seizures daily or have been fully controlled for years.  But what does 'high risk' mean? Well it seems to vary greatly from area to area. Some people have great joined up care between their epilepsy team and obstetric team, unfortunately I think usually this doesn't happen. 

 

It certainly didn't for me in my first pregnancy. I was stuck in the high risk clinic seeing an obstetric registrar whose knowledge of epilepsy was limited.  I went along with everything they said with very limited birth choices and it lead to a fairly traumatic birth experience.

 

When it came to my second pregnancy I really had to fight to get birth choices as I wanted things to be different, I wanted a natural birth with minimal intervention.  My epilepsy was well controlled and yet because I was considered high risk I had to fight to have any choice in my birth, luckily I had an epilepsy midwife backing me up. 

 

I was told I couldn't be in the birth unit because I was 'high risk' even though my pregnancy had been completely straight forward, my epilepsy had been completely controlled and the birth unit was in the same building as the main ward.  For me stress and anxiety trigger my seizures so being in a more homely environment would have been beneficial for me but it was a definite no.  Instead I chose to stay at home as long as possible and arrived at the hospital fully dilated ready to push.  Benji arrived 42 minutes after arriving at the hospital.  It was an amazing birth experience because I was in control the whole time.

 

I feel women with epilepsy need to be treated as individual's and put in control of their care not just labelled high risk and put in a system which doesn't really meet there needs.

Women need more support after the birth

There are many additional issues women with epilepsy face following birth.  The additional issues around looking after a baby when you have epilepsy, weighing up putting in place safety features with just being a mum.  Breastfeeding while on anti epileptic medications and looking out for side effects in the baby.  Epilepsy medication levels varying following birth and side effects these may cause.  The issues around contraception and how epilepsy medication impacts on this.  These are all important issues to consider before the birth but also which women need ongoing support with after the birth.

Epilepsy Action have some great resources to help give women with epilepsy lots of information throughout their pregnancy journey here.

So what would I like to see in the perfect world?  I hope that every women with epilepsy is seen as an individual and given support and information from health professionals with specialist epilepsy knowledge so that rather than just being labelled 'high risk' they are supported to take control of their birth experience. 

Because I know from experience when you have a condition like epilepsy which takes so much control away from you by getting the right support and being given back as much control as possible it makes your birth experience so much more positive.

 

NEXT UP: Be sure to check out the next post tomorrow at Emily's Epileptic Days for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com/epilepsy-blog-relay.

Be sure to check out the Epilepsy Blog Relay Thunderclap to raise epilepsy awareness. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.

We're off to the midwife of the year awards tomorrow

I nominated our epilepsy midwife Kim for the Emma's Diary women's midwife of the year awards and I am so thrilled that she won for our region and tomorrow we get to attend the awards ceremony to find out if she has won overall.  It would be so fantastic if she did firstly because her knowledge and support is incredible and she deserves to be acknowledged.  It would also be a fantastic way to get the issue of epilepsy and pregnancy into the media and bring it to the attention of midwives across the country.  Even  if it just means that a few midwifes decide to read a little bit more about epilepsy that can only be a good thing for women with epilepsy across the country.  So fingers crossed.

Epilepsy Action have written up our birth story and explained why we nominated Kim here, but I'm going to share the article below as it sums it all up perfectly.

Award-winning midwife, Kim Morley’s specialist epilepsy and pregnancy knowledge gave new mum a better second birth

Clair Cobbold had a very traumatic first birth. Despite wanting a second baby, she didn’t know if she could bear another experience like that. She tells Epilepsy Today how midwife Kim Morley gave her the confidence for a second baby.

Ahead of the RCM Annual Midwifery Awards ceremony on March 8, Clair Cobbold explains why Kim Morley is a very worthy winner of the South of England’s Midwife of the Year 2016 award, and nominee for the Midwife of the Year award.

 

“I was diagnosed with epilepsy 12 years ago when I was 19. It was just after I’d started university that I had a couple of tonic-clonic seizures.

 

“It took a long time to get the correct diagnosis, as the general neurologists I saw while at university and after returning home didn't recognise I was also having focal seizures. After starting medication, my tonic-clonic seizures went from one a month to one a year.

 

“Eventually, I was referred to Queens Square in London where they ran more tests and found I had temporal lobe epilepsy. I get focal seizures, which are like a feeling of anxiety sweeping over me and they can sometimes alter my vision. They only last a couple of seconds. I also get tonic-clonic seizures where I go very blue and it takes me a long time to recover from these.

 

“I changed medication about 18 months ago from lamotrigine to levetiracetam and for the first time since being diagnosed, I have been a whole year without having a seizure. So now I am reapplying for my driving licence back! I never thought this day would come and had accepted my seizures

were probably here to stay.

 

“I found being diagnosed with epilepsy at university hard. I felt it took away a lot of my independence and stopped me from doing the things I wanted. But I found a way to turn things around and became an Epilepsy Action Accredited Volunteer when I was 20. I have learned so much about epilepsy and now it's not as scary anymore. I don't let my epilepsy stop me anymore and just find ways to make it as safe as possible so I ride my horse and ski.”

 

Riley

 

“Riley was born on June 3rd 2012 weighing 8lbs8oz. Throughout my pregnancy I saw a lot of health professionals because I was considered high risk. The local hospital where I was planning to have Riley wasn't used to dealing with women with epilepsy. They all came up with a plan that was very medicalised and controlled. I just went along with it because I didn't know any different and I wanted us to be safe.

 

“When I got to hospital I was already a long way through labour (9cm dilated) but they decided to follow the plan anyway. They gave me clobazam to reduce my risk of seizures and an epidural to control my pain, as they were worried that could trigger seizures.

 

“Both of these slowed my labour down and 12 hours later Riley still hadn't arrived and we had both become distressed. I was taken to theatre and she was delivered by forceps. It was very traumatic and my husband, Rich, wasn't told what was going on and thought we had died.

 

Clair had a difficult experience of pregnancy and brith with Riley

“After the delivery, I was in a lot of pain and very distressed and confused. The neurological team at the hospital decided to drop my epilepsy medication dose back down to my pre-pregnancy dose overnight putting me at risk of breakthrough seizures.

 

“Rich wasn't allowed to stay with me on the ward and Riley was placed in bed with me to feed for hours on end as she was very upset. This put her at a huge risk if I'd had a seizure, which, luckily, I didn't.

 

“Following the birth, my husband and I were both very upset and found those first few months really tough. I had some very low times in those first few months and looking back, I wish I'd found help. But we got through those tough times and then I loved being a mum. We put lots of safeguards in place to keep Riley safe if I had a seizure.

 

“We feel blessed that Riley doesn't seem to have been affected by my epilepsy medication or the seizure I had at the beginning of my pregnancy. She is now a healthy, happy three-year-old, and has grown up learning a lot about epilepsy. She knows exactly what to do if I have a seizure and is a pro at getting trains and buses!”

 

Meeting Kim

 

Kim Morley won the RCM South of England Midwife of the Year 2016 award

“Epilepsy Action approached me to write for the pregnancy diaries and help with the HealthE mum-to-be campaign. I found that was a really positive thing for me. I wanted to make sure other women got more support during pregnancy and being a new mum than I did. Sharing my story seemed a good way to do that.

 

“It was, in fact, while helping with some pregnancy and parenting workshops for the campaign, that I first met Kim.

 

“A few years on, we started thinking about another child as we wanted Riley to have a brother or sister. But the idea of going through that trauma again was too much so we looked at other options. We looked into adoption, but unfortunately were rejected because Riley was too young. That was when I decided to have a chat with Kim to see if the birth experience could be different.”

 

Benji

 

Kim helped Clair gain the confidence to have her second baby, Benji

“Benji was born 2nd October 2015, weighing 9lbs. He is now nearly 5 months and doing well. I am breastfeeding him still and we are lucky because he sleeps a lot better than Riley did. He's a really happy, smiley baby and we feel really lucky to have him. Riley loves being a big sister and Benji thinks Riley's the best thing ever!

 

“Our birth experience with Benji couldn't have been any more different and most of that is due to Kim. The second time around, we just wanted things to be less traumatic and to be able to enjoy those first few months rather than battle our way through them.

 

“The first time we travelled down to see Kim (it's about 2 hours away from us) she gave us so much of her time. She just gave us the opportunity to talk about what had happened and to cry.

“She said she thought we had both suffered from post-traumatic stress following Riley's birth. She said things didn't have to be like that and we did have options to make a second birth a more positive one.

 

“Not long after that, I found out I was pregnant. I sent Kim a number of emails with questions and she just answered them in a calm reassuring way.

 

“We went down to meet her again and put my birth plan in place. Kim's knowledge about epilepsy and pregnancy is so incredible, that we just felt we'd found someone who could answer all our questions.

 

“Kim never told us what to do, she gave the control back to us. She asked us what we wanted and gave us all the facts and her own insight and together we came up with a plan.

 

Riley and Benji

“My biggest concern was that I didn't want the birth to be overly medicalised; the less intervention the better. Kim said that because my epilepsy seemed to be pretty well controlled, there was no reason why I needed lots of intervention.

 

“Kim gave us the confidence and medical backing to go to our local hospital and say we wanted a natural birth with low intervention. Kim made me realise I didn't have to say yes to everything the doctors said. She gave me the confidence to enjoy my pregnancy rather than worrying what might happen because of my epilepsy.

 

“When it came to labour I stayed at home for most of it as Kim had helped me come up with strategies to reduce my anxiety. I got to the hospital already ready to push so all the midwife had to do was catch Benji, pretty much. I just had a little bit of gas and air during pushing but other than that no other intervention – no clobazam, no epidural and no IV.

 

“I remained active during my labour, and I can remember the whole thing. Afterwards, I was able to just sit and cuddle Benji and even have a cup of tea and a shower and Rich was there the whole time. It was such a positive experience and my recovery after was so much better.”

 

Midwife of the year

 

“We were looking for a way to say thank you to Kim for all she did for us. When I saw the award, it seemed perfect. Without Kim, I don't know if we'd have felt confident enough to have another baby, and I wanted a way to say thank you for helping bring us Benji.

 

“I am so happy that she has won the south England region award! Kim doesn't realise how amazing she is. She is a very quiet person who doesn't shout about her achievements. And yet, she has made such a huge difference to the lives of so many women with epilepsy.

 

“She really deserves this award. I also hope it will highlight the need for better support for pregnant women with epilepsy to lead to better experiences for others.”

 

 

RCM awards

 

The RCM Annual Midwifery Awards 2016 will be held in London on March 8. The RCM will announce the winner of the Midwife of the Year award, for which Kim Morley is nominated. The Epilepsy Action HealthE mum-to-be campaign has also been shortlisted for an award at this event in the Best Charity Initiative category.

 

Benjamin Dylan arrived ~ 2nd October 2015

Yeap he's here and we're doing well. As for the birth it was amazing and I couldn't have hoped for better. So here it is - our birth experience take two!

It was 4pm on 2nd that I first noticed contractions but it's possible I'd been having them a while longer as we'd been busy with friends all day. As it was Friday evening I decided to call Rich and mum and get them there just in case and it's a good job I did! I rang delivery Suite as I was a bit worried my waters were leaking but they said unless my pad was soaked they probably weren't. Turns out when they examined me later they had already gone so not sure when that happened!

By 6pm I was pretty sure it was definitely happening and so put my TENS machine on and we had something to eat. Then it was Riley's bedtime! Rich went through the bedtime routine with her while meanwhile my contractions were getting closer and stronger. I used my mindfulness and positioning and felt I was coping ok. When my contractions were 2 minutes apart but only lasting 45 seconds I rang the hospital again. They said take a bath and have some paracetamol. Now taking paracetamol at this point in labour seems to me like offering someone who has just been shot some paracetamol - not really going to do a lot.

At about 8.15 we decided we needed to go, my contractions were lasting a minute and coming every 1-2minutes. We arrived at Epsom at 8.35pm. I made it up to the ward and met the midwife on her way up to the ward. They were really busy but when I got in the delivery room I suddenly needed to push. It's weird as your body just takes over and tells you what to do.

The midwife assistant had to run up to the ward to find the midwife. She came down and examined me and I was 10cms and ready to push. She set up the gas and air and because there was no time to get mats out I decided to push on the bed, possibly the only thing I woukd have done differently.

It was an amazing experience to feel everything - I'm not going to say a nice experience but amazing none the less. And at 9.15pm Benjamin Dylan arrived weighing 9lbs exactly.

The midwife delivered him, placed him straight on me, we found out it was a boy and I was so in the moment it was amazing. Then she left us to help deliver another baby. Tears of joy roled down my face as I was able to hold my baby, give him his first feed after having the birth experience I'd worked so hard for.

She eventually came back and stiched me up as I had a 2nd degree tear. Then I had a cup of tea and a shower and was able to walk up to the ward with Benji and Rich.

It was an incredible experience and made me realise just how close I was with Riley to being able to deliver her naturally when they medicalised the whole thing. But I guess that's the thing, every birth experience is different. I feel blessed to have been given a second and much more positive one.