Pregnancy was a eye opener for me in the lack of understanding in maternity services of the impact on women with epilepsy. Everyone has their own birth story to share so I’m not going into yucky details but a few things stuck out.
During the first meeting with the midwife – form filling basically – she never asked me about my epilepsy. She asked if I was taking any sort of medication – obviously I told her that I was on lamotrigine and folic acid. But she didn’t enquire about triggers. She didn’t tell me how to manage morning sickness with tablet taking or even how tired I would feel, which was a totally natural symptom in the first trimester.
She wasn’t incompetent but it did worry me. I like to be in control, I like to know the details – medical jargon doesn’t intimidate me. Give me the facts – tell me that I have a higher than normal risk of dying in pregnancy. It might scare your other normals but secrecy will not extend my life expectancy – tell me how to take reasonable precautions to avoid fits, don’t avoid the tough issues that will only be flagged at the 20 week scan – I know that my pregnancy could end in heartbreak.
Maybe I’m being unfair – perhaps she just wasn’t trained in epilepsy and didn’t know the questions or answers. Her skill set might have been as the contractions cheerleader. The most common neurological condition rarely happens to women of child bearing age…This was my first baby – I’m not the expert.
I was lucky that there was a women’s health neurologist at the hospital. Dr P made me go for regular scans and check ups with the obstetricians. It was a privilege to see the baby develop in those grainy images – most women only get a few strategic opportunities. I had been told or at least led to believe by the doctors, that I would have a caesarian section as a high risk case. My midwife told me not to bother with birth technique classes because I wouldn’t need them. Turns out that on the day the midwives on duty didn’t agree. I’m not sure that they even realised about my condition despite the bundle of paperwork in front of them. Regardless, they wanted me to go through the normal birth experience, really without explaining why, the process or with my consent.
If someone on the labour ward had asked me about my epilepsy then they would know that tiredness and stress were triggers; they would have known that I needed to take my tablets on time; and how gas/air panicked me as it felt like a fit was coming on – for me it was not the ‘lovely floaty feeling’ that other women experience – my brain was doing somersaults. Did it occur to them that erratic breathing in itself can cause a fit? They might have even monitored me regularly to check that I hadn’t had a major fit and lying dead on the floor. I was even sick all over the bed, according to the midwife this was a good thing! The one and only time someone has said that to me…
After almost 24 hours without sleep – I can’t even remember if I took my medication but I would have vomited it up anyway – the doctors called time and I had an emergency caesarian. I was so relieved – I felt back in control again and the situation felt professional. The anaesthetist was called Spiro, he calmed me down and chatted about his shift. I was a person again – he talked to me as a sentient being rather than to my cervix, which was rather mute that day.
In the end, the baby was removed in 10 minutes. It took 40 minutes to stitch up my abdomen and I was wheeled out of theatre holding my new daughter. This was my version of the perfect birth.
I will never understand how I went through a carefully managed pre-conception programme and pregnancy, with epitologists and an obstetrician, as a high risk case, right up to my hospital admission; then assessed on the delivery day as a low risk straightforward birth and sent to a birth suite; but ended up having an emergency operation in maternal distress as a high risk case. What were those maternity ‘professionals’ on – was I caught in the middle of a protest, a serious gap in knowledge of epilepsy, or an experiment?
If I am lucky enough to have another baby then I am booking myself in for the C-Section. No earth-mother nonsense – forget the scented candles. On this one occasion I am a hands up special – save the birth suite and womb cheerleaders for the normals: just cut me open like an alien autopsy.