Open Letter to Birth-workers for Epilepsy Awareness Week

Dear Birth workers, (Doctors, midwives, doulas etc)

This week is Epilepsy Awareness Week so I am writing an open letter to you all reflecting on my experience of being labelled ‘High-Risk’ in pregnancy due to having Epilepsy. I became pregnant in February 2015. This was my first baby, I was 30 years old. Around 2,500 women with epilepsy will have a baby each year in the UK. One in every 103 people has epilepsy. So the chances of you working with a woman and/or a family that has a member with Epilepsy is incredibly high. It is not an uncommon condition and I hope that this note might be a useful resource for those times.

First, I would like to say what utterly incredible work I think you all do. I am simply in awe of how hard you all work and I cannot begin to say how grateful I am for you. However, my experience of care during pregnancy and  postnatal period was very challenging and has left me saddened, which is the reason for this letter.

Early on in my pregnancy I was given a list of things I, ‘A Pregnant-Epileptic-Mum’ could not do. First on this list it said “Do Not Carry your baby on stairs”. I live in a garden flat accessed by a steep flight of metal steps. I had nightmares after that appointment for the rest of my pregnancy and still get twinges of fear when I am on the stairs with my baby – am I being irresponsible to go out and buy food?! My interactions with the medical staff left me feeling trapped and like my very existence was endangering my unborn child. Even that I was incredibly selfish to want to have a child.  I was made to feel toxic, and that no one wanted to ‘be responsible’ for me. Basically people where frightened of me, or more accurately of Epilepsy. At 38 weeks I went into labour naturally and after 14 hours had a straightforward, hospital vaginal delivery, supported by my amazing Doula and family. And despite all the concerns and disabling lists it was extraordinarily ordinary.

However, I believe my care could’ve been easily transformed by birthworkers keeping a few simple things in mind; First and foremost by remembering that I am a Woman. Just like all the others you work with. Just as nervous and excited and unsure as everyone else who is about to have a baby. Everyone has unique challenges. My challenge happens to have a name which labels me as ‘high risk’ on your forms. But please remember before I am ‘An Epileptic’ I am ‘A Mother’ like all the rest, and I need/ed to be treated as such.

Secondly it would’ve been transformative if  you had recognised that anyone with a ‘life-long’ condition, such as my Epilepsy is for me will know far more about their own (dis)ability than any degree could have taught you. Plus they will likely have much more anxiety around the way it will affect their baby it than you can begin to imagine.

With these two things in mind it follows that what I really needed, what I craved, was encouragement, patience and kindness. Just like all women, instead of pointing out obvious problems, which only caused extra anxiety, heartbreak and downright terror. Solution focused, positive, hope-based and realistic discussion is what was needed. Instead of telling me I couldn’t walk down stairs, you could help me work out how to manage accessing my home. Enabling not Disabling me.

I know that many of you know this. I know also that this is a complicated issue, that you face huge barriers of resources and bureaucracy, that you are all trying your very best. And you cannot be experts on everything. I know that. But still, from my heart to yours I want to ask you. Next time you meet a pregnant woman who happens to have Epilepsy, whatever you do make sure she knows you believe that she can do this thing. That she can have a healthy happy baby. Just like everyone else. Epilepsy makes you feel like you can’t. She needs cheerleaders.  My Doula and my family were those people for me. Many women don’t have that luxury. You, in your role as a Birth worker can be that person. It could change her life.

I hope that by writing this to you, it might help other women labelled ‘High-Risk’ to be able to have more positive, supported pregnancies than I did. If you would like to know more specifics about my pregnancy and postnatal experience please do not hesitate to get in touch with me.
Thank you for all your wonderful work

With much love

Lucy Baena

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