Disability & Pregnancy

This week’s One Born and Netmums blog themes are disability and conception. Last week was the first week I sat down to write my blog post on time but unfortunately I didn’t have anything to say as I was never a rule-breaker. This post will definitely be on time!

I’ve had seizures since I was eighteen but had trouble getting a diagnosis because I was a first year uni student and it was assumed I must have taken drugs. Eventually (ten years later) it was finally confirmed that I have epilepsy.

At the time that I was diagnosed my husband and I were trying to conceive. We were warned that I was not to get pregnant while different medications were introduced, and so, with a heavy heart, I went back on the pill.

It took a while to get my medication right: sometimes it didn’t stop the seizures, sometimes it made me feel ill, and once it made me near-suicidal. Once the right medication had been found and the dosage had been tweaked it was time to find the most pregnancy-friendly equivalent – and then start again with the dosage.

At first the medication wiped me out and I had to take flexi-time at work while I adjusted. Finally, over a year later, I was told that it would be safe for me to get pregnant so long as I took a high dose of folic acide for at least three months before conception.

As I was settling back in to work it definitely wasn’t the right time, and as life carried on we kept thinking we’d wait a little longer.. and a little longer.. until we weren’t quite sure when we might try again. Then, in October 2010, I was sent home from work suffering with dizziness. The doctor asked me to do a pregnancy test, which was negative, and I was treated for labyrinthitis. Soon after I started complaining of heartburn, tiredness and nausea, which led one of my colleagues to constantly ask me if I was pregnant. I was certain I wasn’t because of the negative test, but it turned out she was right.

On November 5th 2010 I was in agony with abdominal pain. I decided not to go to A&E as I thought they’d be overrun with burns and drunks, but I promised my husband that if it was no better the next day we’d go then. All day I put it off, but then I agreed that I would take a pregnancy test and if it was positive we’d go to hospital, but if it was negative I’d take painkillers and try to sleep. We both thought we’d be staying at home.

When the test was positive I burst into tears and then went into shock. I was convinced I was not only losing a baby but a fallopian tube too. As tests and scans began to indicate that the baby would be okay I started to get excited, but in the back of my mind was the fear that if anything happened it would be my fault as I hadn’t been taking folic acid and was still on medication.

When I was rushed in to hospital, bleeding, at christmas and again at new year I was terrified that I’d hurt my baby and that he wouldn’t survive.

But survive he did, and at my (extra) scans it was clear that he was growing well and that his spine was developing properly. As time went by we became more and more confident that everything was going to be okay, and when I had to increase the dose of my medication in the second and third trimesters I felt fine because I knew we’d passed the most dangerous point.

Although I had continued to suffer seizures throughout my pregnancy I never had a tonic-clonic (previously known as grand mal, the typical type of seizure you see on television) and I didn’t injure myself at all. During childbirth I felt as though I might have a seizure twice and they decided to give me an epidural, but Ted came too quickly.

On the 22nd of July 2011 at 7.47am Edward Thomas was born, weighing 9lb70z. I didn’t have a seizure during the birth. Ted didn’t show any signs of having been affected by my medication. The only post-natal implication for Ted was that my breastmilk made him too drowsy and, after initially trying combination feeding, we had to switch exclusively to the bottle.

Having epilepsy didn’t affect my pregnancy, and luckily the medication doesn’t seem to have affected Ted either, but I did spend the whole nine months panicking that something would have gone unnoticed and that I would always have to live with the knowledge that I had harmed my baby.

Next time, because there will, I hope, be a next time, I will endeavour to do everything right. I’ll take folic acid before I stop taking the pill, and I’ll go for pre-conception drugs counselling, and I’ll make sure that I rest when I’m exhausted.

I know that some things are beyond our control, but I also know that feeling in control can at least allay some of the feelings of dread and panic. Perhaps that will be enough to reassure myself that Ted will have a healthy little brother or sister.

Jumperooooo

Could I bounce like this if I wasn’t healthy?

One Born Every Minute is on Wednesday nights at 9pm on Channel 4

To join in the challenge head to NetMums and Tweet @netmums & @c4OneBorn.

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About Stitches and Stretchmarks

Honest and frank Mum of one.
This entry was posted in Childbirth, Difficulties, Health, Pregnancy. Bookmark the permalink.

8 Responses to Disability & Pregnancy

  1. hannonle says:

    What a cute picture!
    I know you had a rough time and it’s great that you had a happy outcome 🙂

  2. That must have been hard dealing with all the emotions and worry about medications and the seizures in pregnancy too, you are a brave strong lady to want to go through it all again to bring another gorgeous baban into the world! 🙂 x

    • Thank you, I really appreciate that. I wrote it really because I don’t think people consider the implications of illnesses you can’t see. It was terrifying at times but I always knew I was doing what was best for Ted even if it didn’t seem like it.
      The worst moment was when my original consultant said “we’ll just take care of you, you’re the only person who’s important in this situation. You can always have another baby.”
      I got another consultant and he was amazing.

  3. Louise Holland says:

    What great timing! I’m 7 months into my second pregnancy and had been doing really well seizure-wise this time (one mini). Yesterday morning I had a tonic clonic which has really knocked me back. Lovely to read a blog from someone who’s been there themselves. Good luck with your 2nd pregnancy when it happens 🙂

    • Did you hurt yourself or are you just feeling tired and sore? It’s great that you’ve done well so far. My consultant told me there’s a sudden change in metabolism in the last 12 weeks so it might be worth giving your nurse a ring to see about increasing your meds?
      Will you let me know how you’re doing & send me a pic once baby’s here? I love pregnancy & baby stories now 🙂 I think it’s important we let other women with epilepsy know we can do it, too. It’s scary but it’s manageable 🙂

      • I’m so glad it’s more positive this time. Not long to go now!
        As much as I’d love bump number two Ted’s only six months & our financial situation just took a turn for the worse, but hopefully not too long! I’m sure I’ll chronicle the whole thing on the blog.

  4. Pingback: Invisible illness | Stitches And Stretchmarks

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