Epilepsy affects all
In keeping with the theme that epilepsy affects whole families and not just the person with epilepsy, and I think it is fair to say this trimester has taken its toll on Chris too. This is the first of a two part entry covering the second trimester, lining up with my entries as much as he could.
I sat down to watch this with Faye and it took us a while to go through it as she was taking notes the whole way through it. I was really pleased that epilepsy was getting some exposure. My first surprise is how much the local governments were failing to meet NICE guidelines, and the variations in care depending on where in the country you were.
It was also good to see MP’s standing up for epilepsy, in particular Laura Sandys made a very passionate introduction and some of this I think comes from Laura herself having epilepsy, she was in a perfect position to give both an insight and opinions on epilepsy care. Teresa Pearce covered women with epilepsy having children and brought up the fact that improved support, services and advice for women having children were needed. To me it highlighted why Faye’s blog is so vital not just for her/us but for others with epilepsy. Faye has always tried to provide the support to others that she found missing when she fell pregnant.
20 week scan/ foetal echo
At the 20 week scan it was brilliant to see the baby and see how they were growing and watching as they were checked over. We have always said we didn’t want to know the sex of the baby and we made it clear when we walked in that we didn’t want to know. However Faye being Faye once she knew the sonographer knew the sex she kept asking her. My wife has to know everything! Thankfully we walked out of there not knowing the sex. The sonographer was really nice, she was good at asking questions and answering any questions we had no matter how small, she also made a point of talking us through what she was doing so as to reassure us.
Then a week later we had the foetal echo, I couldn’t believe they couldn’t have done this at the same time as the 20 week scan as to me it just seemed like a normal scan. Thankfully the echo showed nothing obviously wrong with baby’s heart.
Friday 6th March will go down as one of the worst days ever, you start the day with no clue that it’s going to go so badly wrong so early on. I had told Faye repeatedly not to go back to work, she was being sick and was weak which in turn was making the epilepsy worse. Although I didn’t agree with her reasons for going in, I know how stubborn my wife is and knew I couldn’t stop her, but not for one second do I blame her or hold her responsible for what then happened.
When the phone rung at 06:50 I assumed it was Faye calling for a quick chat before we started work, I had no clue what was about to unfold. When I heard Fayes work mate on the phone I knew instantly what was wrong, and she confirmed my worst fears, her first tonic clonic seizure in the best part of two years, I knew it was bad when she told me Faye had taken a fall down the stairs. I asked her work mate to ensure she was taken to the hospital Faye is under for both baby and epilepsy which luckily the ambulance crew were already planning on as it’s less than a ten minute journey (I’m informed it was a four minute journey on blues in rush hour!)
I then phoned Steph (Fayes sister) to make her way to the hospital as she lived locally and as I was on the other side of London in rush hour I had an idea it would take me a long while to get to the hospital, and I wanted someone with her. As it turned out both myself and Steph beat the ambulance to the hospital because of how long they had to treat Faye at the tube station. Fayes work mate was really good at keeping me up to date and was fantastic at relaying information to me. I have to thank her from the bottom of my heart for what she did that day, I know having her with Faye made a horrible situation that little bit easier for Faye.
I managed to speak to Faye and once I realised she was ok in the sense she was conscious and breathing and hadn’t sustained any life threatening injuries my concern shifted to the baby.
It was awful seeing Faye when they took her out of the ambulance, she was strapped to a spinal board and she was obviously shaken. The paramedics reassured us that at that point this was all precautionary. Faye was then taken to resus and we were asked to wait in the relatives room, this to me proved how serious it was. Steph being there made the world of difference, having the company and someone to stop me bouncing my head off the walls. The next thing to be done was phoning our parents, it was a horrible job but one I knew I needed to do.
As soon as they had checked Faye over and decided on the tests/scans they needed to run they allowed us to be with her, they then got an obstetrician to come and scan the baby, there were concerns that the shock and stress would send Faye into premature labour. The scan showed baby was ok, moving and the heart beat was fine. Faye was really upset, she didn’t seem to register that she had had a scan, and was crying saying that she could have hurt baby and it would be all her fault. It wasn’t nice seeing her feeling so guilty over something that she had no control over. It upset me that she was so upset and nothing anyone said seemed to comfort her.
She was then taken for a scan to check on her spine, it felt like she had been gone for an eternity and we started to worry. However the doctors kept us informed and told us there had been a hold up at scan. The resus team were really reassuring, making sure we were ok and keeping us informed when we had to leave the room or Faye was taken elsewhere for scans. Faye was really upset when she was brought back from the scan, the doctors told us this was normal that it was the adrenaline wearing off. Then we just had to wait on her test results, I was relieved to know that there was no serious injury to Faye from the fall, and that ligament and muscle damage was the worst damage done.
As much as I knew she hated it I was pleased they kept her in to be observed, as much as I wanted her home I knew she was in the best place and safe hands. The neurologist who came down decided that until she saw her own team on Wednesday Faye was to take Clobazam on a daily basis to cover her as this had worked before in recovery for her.
Then I went home alone, I was numb and didn’t know what to think, I couldn’t sleep my mind was racing where I was still worrying even though I knew they were both ok. It had been a long day, the call came to me at 0650, and we had been at the hospital since 0730 and didn’t end up leaving the hospital until 2330. It was a day I was glad to see the back of.
The days and week that followed is a bit of a blur, my work was brilliant giving me the time I needed to be with Faye, they were very understanding. If I am honest I was wrapping Faye in cotton wall so she was ok and rested, knowing how stubborn she is I knew she needed a close eye being kept on her.
On Sunday 26th April Chris completed his first marathon. As if this isn’t an achievement enough in its self this was event number 6 of 15 events this year for his #wadds15in2015 challenge. This is enough of a challenge alone but he has kept going with it along with looking after me and bump. Chris is raising money for Cancer Research and if anyone has pennies going spare I would be grateful if you could donate to my amazing husband, we all know someone who has been affected by this God awful disease. I have no words to tell you how proud I am of him…. Faye xx
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.