Encephalitis & Pregnancy

[Elle2090]

Hi Everyone,

I just wanted to know if anyone has been through pregnancy who has auto immune Encephalitis and what your experience was?

I have Anti NMDA Receptor Encephalitis. I was lucky enough to have it caught and diagnosed really early so the doctors were able to treat me stat.

I'm 30yo and would like to start having kids in the next 2-3 years, but I'm scared about the outcome for both the health of the baby and myself. I've read stories where the baby has been diagnosed with a condition of some sort or the mothers condition has deteriorated. I suppose I just wanted to know if there was any hope that both mother and child turn out ok.

This upsets me (my eyes are welling up as I type this) because I really want children but I'm scared of the outcome.

Elle

[Jensibel]

Hi Elle2090.I'm a lady who had HSV-encephalitis when I was 26 years old and was also worried about future motherhood.

I stopped having periods for about 10 months after getting the illness, but they did then come back as normal in the end.

I also then went on to become a Mum.

I had twins (!!) five years after my Encephalitis. Naturally conceived, so not IVF or anything. Both born healthy and well.

I was relieved that I managed reasonable well with being a new Mum. Because of my E memory difficulties, I kept a whiteboard timetable at home. I listed all my motherly chores - feeds, nappy changes, poos. This kept me reassured that I wasn't missing out on anything. And if a twin cried, I'd check their notes so I knew if it was hungry tears, upset tummy, or just regular 'cuddle me grown up' attention tears 🤣.

Now my twins are 10 years old and they help Mummy. They put things on the house calendar, like school non-uniform day or Cubs meeting at a different place etc.

Good luck with your recovery. There's light at the end of that tunnel!

Jxx

[Elle2090 in reply to Jensibel]

Hi Jensibel, I really appreciate you sharing your experience and I'm so happy for you that you've grown a wonderful family especially after Encephalitis. This is very encouraging and gives me hope 😊 Thank you! Elle

[EncephInternational Partner]

Hi Elle2090,

Thank you for sharing that with us. You are not alone in worrying about the possible implications of having had encephalitis for having children.

We recently made a film on our YouTube channel with Jasmine, a life long member of ours. Jasmine's mum Dawn had encephalitis when she was 17, and has gone on to have 2 lovely daughters. Jasmine, who was 13 at the time of filming, talked to us about what it's like growing up with a parent who has been affected. You can watch the film (if you'd like to) here: youtu.be/v3coQWVEhDA(Not working as expected?)

We are here for you. Please don't hesitate to get in touch with our support team if you've any questions or would like to talk anything through.

[Elle2090 in reply to EncephInternational]

Thankyou so much EncephInternational ! This is fantastic. That's a very comforting story and it's only adding to my determination to get through this to have children of my own 💪🏽

[so_rogers]

Hi Elle,

Whilst I haven’t experienced pregnancy post my encephalitis (I also had Anti NMDAR in 2017), I’m now 32 and my husband and I are ready to try for children.

You’re not alone in your worries - despite having a very good recovery, I definitely feel them too! Really, I just wanted to say thank you for sharing.

Wishing you all the best for the future.

Steph

[Elle2090 in reply to so_rogers]

Hi Steph,

I'm so glad I'm not alone. My fingers are crossed tightly for you and your husband and I really hope that once you do get pregnant that there are no complications! I would love to hear more from you when the time comes, but only if you're comfortable with sharing of course.

All the best

❤️

Elle