Epilepsy and childbirth - advice needed

[Redheadgal]

Hi,

I'm 34 weeks pregnant with mild epilepsy which is completely controlled using (a relatively low dosage of) lamotrigine. I have been seizure-free for almost 7 years. Prior to 2004 I wasn't on any medication and apart from two tonic clonic seizures where I lost consciousness on one occasion (aged 14 and 18) I had had only partial absences. Like many people with epilepsy I knew what triggered these fits - lack of sleep, hangover, stress and bright light conditions. But as I said, since being on medication I have had absolutely no problems.

I saw my consultant yesterday (actually, no I saw a registrar as the consultant was too busy) and was told I was 'high risk' and therefore I should be booked onto the labour ward. I am really disappointed and frustrated that this decision was made without considering my personal circumstances. Although this is my first baby and I don't know what hormonal changes my body will go through or how I will react, I don't regard myself as high risk. Even if my medication stopped working I know my body well enough to recognise the warning signs and I'm responsible enough to know to get help.

I'm particularly disappointed because being on the labour ward means I can't have a water birth. Since my medication rules out pethidine and I don't want an epidural (I know, never say 'never') I was relying on using TENS, entonox and the birthing pool for pain relief. It seems harsh to limit my pain relief options even further by ruling out using a birthing pool. Ideally I'd like to have given birth in a MLU with a pool, where I can control the lighting and where my husband can stay with me all the time (particularly important after the birth when I would apparently still be at risk of a seizure). The question is how can I convince my consultant and the midwives that this is the best option for me? [note: it's a birth centre which is attached to the hospital so the labour ward is just upstairs]

Does anyone have any advice about this sort of thing? I don't want to exercise my legal right to have a homebirth but am more than prepared to do so.

Cheers!
RHG

I'd ask to see the consultant to discuss this TBH.

You could ask your CMW how to get in touch with the Supervisor of Midwives, but the usual procedure with MLUs is that they need the consultant to sign off on you going there if you've been considered high risk at any time.

They do seem to be very cautious about anything that could make you slip under the water though - e.g. that's why you can't have opiates and then use a pool. So you may find that even if they were okay with you going to the MLU, the pool may be ruled out, because even a momentary absence could cause you to slip under and they don't want to risk having to pull a hugely pregnant labouring unconscious (or unable to help herself) woman forcibly out of the (usually quite big) pool to stop you drowning.

At the MLU, you might have access to a shower or bath though.

I really sympathise - had hoped for a home water birth myself but due to OC am now going to be on the CLU, possibly induced. Entonox makes me horribly ill and various health things mean an epidural is less likely to work for me, so I'm very restricted on pain options too.

I am in the same position as you, i also have severe SPD and the ideal for this would have been a water birth but the consultant would not entertain it. I have spoken to the head of midwifes, and unless the consultant agrees i have been told they wont do anything.
I stated i would then have a home birth but struggles to get agreement for a midwife to attend so i am stuck on the labour ward too.
In our hospital we have a midwife led unit right next door but they will not let me use that either as they need a consultant near by. I stated that he would be just as near in the unit as in the labour ward but no deal.
I hope you get further than i do and would love to hear how successful you have been as could use some more ammo.

XX

I'm a midwife so I thought I'd jump in! I have looked after two women at home who have had epilepsy, both have been fine. You are more likely to have a fit in labour than if you were doing your shopping in asda, this is due to the stress etc. However, if bright lights and stress set you off, you need to consider what effect that a hospital environment would have on you. Labour is less likely to be complicated at home, regardless of who you are and what risk factors you have.
Honestly, its very unlikely you'll have any problems as you're last fits were so long ago, however, never say never. If you had a fit in hospital nothing would be done immediately anyway - we can't operate and perform caesarean on someone who is fitting regardless of whether they are at home or hospital, however, the baby probably would be out quicker in hospital. If you exercise you're legal right to hb the hospital trust will say you dont have one, however, if you ring in labour then they cannot refuse to send a mw to you - thank god this is anonymous, I'd be sacked haha! Obv noone want this - ask to see a supervisor of midwives. Is your community mw supportive? If not ask for another mw - dont worry about being "awkward" - the majority of mws champion women like you because we cant stand to see people bullied into submission by drs who wont even remember their names once you've left their line of sight.

To chucklecheeks - SPD is no way, NO WAY!!, a contraindication for homebirth!!! That is the biggest load of hog wash I've ever heard! Ask your dr how your SPD poses a threat to the wellbeing of your child! All it means is you won't be able to get your legs into stirrups which is all he's interested in!! With you I would 100% say refuse to come in. They'll send you a midwife if you ring in labour - otherwise tell them they are contravening their NMC rules that state they have a duty of care to you. I'm actually fuming whilst I write this!!

God if you live in the south west I'll come deliver you! What a load of toff!

Now I've calmed down a bit, both take a look at the "Can I have a homebirth if..." section of www.homebirth.org.uk, and ask your drs for some evidence and statistics. If there are any other complicating factors you'll need to look at these too.

Stick to your guns! x

Brilliant. Thanks hkt87! I will check out that website. It's great to hear a mw who is supportive, the one's I've meet look panicked and rather scared. I'm seeing a different cmw on Monday so I'm hoping we'll be able to persuade her that it would really work for me. I've never had a fit without plenty of warning (the only time I really fitted properly was the first time when I didn't recognise the warning signs). I know I'd have plenty of time to alert the mw and get into hospital and, as you say, there isn't a great deal they could do for me immediately anyway.

Chucklecheeks I definitely think we need to as hkt87 says 'stick to our guns'. The best birth for us and our babies is one where we feel relaxed and in control and tbh I think that outweighs the slight medical risks that health care professionals keep coming up with. We need to be seen as individuals not as walking medical conditions. (I was so annoyed to be greeted by the registrar last week with 'you're an epileptic...' no! I'm a pregnant woman who has a history of epilepsy'. This does not define me nor am I going to let it define the type of birth I want!)

Japhrimel you really are limited on pain relief options - you poor thing! Is this your first? Might there still be a shower on the CLU?

You aren't as limited as you think on your ain relief options. I am 32+6, and have been in discussion with my Neuro and Obstetrics consultant, and apparently the reason for not using pethidine is because it can be matabolised into something that can bring on seiures.

However - the alternative to pethidine (Meptid) doesn't do this, and also, if your hospital/PCT offers this, there is also the option of Diamorphine. (My PCT doesn't do diamorphine, so if I need anything more than G&A, then I'll be going for Meptid).

You may also find that the aneasthetist might not be very happy to give you an epidural though, I know epilepsy rules out an epidural in my PCT.

I was also warned off the Tens machine as well.

HTH.