Monday 28 November 2011

12 weeks ~ first scan

The first 12 weeks seemed to drag on and on, I was being sick daily, had lost half a stone and could only face eating twiglets and bread.  The day we went shopping and they had sold out of twiglets seemed like the end of the world for me!  And although it was horrible being sick all the time I was also quite relieved, I don’t know the scientific reasons why people are sick in the first few months but everyone had always told me it’s a sign of a healthy baby.  After the seizure so early on I was so worried about the baby having something wrong with it, the fact I was being sick like so many other pregnant woman was what I was grasping onto as it seemed normal and so I hoped the baby was normal.

From an epilepsy point of view being sick every day is not a good thing when taking regular very important medication.  I changed my medication times from 10am and 10pm to 8am and 8pm to avoid the times when I was feeling most sick.  The epilepsy nurse had said not to retake my medication unless I could actually see it in my vomit, luckily I wasn’t sick close to taking any of my meds so it wasn’t a problem.

The day of the scan came, I was so scared, I was shaking and my heart was beating so fast, I wanted so much for the baby to be ok but I felt like so much was against us, not only had the baby had to battle against my medication it had also had to go through a tonic-clonic seizure with m e.  I know it had only been 12 weeks but I was already attached to the baby.  We met Emma in the waiting room, it was only the second scan she had been to, the first being her Mum’s when she had Emma’s brother.  Apparently most women don’t want students at their scans, I don’t know how I’d feel about a student I didn’t know but I didn’t even have to think whether or not to let Emma come, she was there to help me and I wanted her to be able part of the whole journey.

When I first saw our baby I was mesmerised, it was amazing, words just can’t describe how I felt.  I had found it difficult to believe I was pregnant in those first few weeks.  If it wasn’t for the pregnancy test telling me I was pregnant I could quite easily just have felt groggy and tired.  But seeing baby on the screen made it all so much more real.  That little person was inside me, and it really was a little person.  We could even see its beating heart and little arms and legs and it was really wriggling.  The ultrasound technician took some measurements and said everything was perfectly average, those were the best words I could hear, all I wanted was a normal, average baby.  She said although it was still early days and the 20week scan would show more as far as she could see the baby was completely normal, no obvious abnormalities.  I knew cleft lip and palette are the most likely deformity with Lamotrigine so I asked whether they could tell if the baby could have that, she said it’s still very early days so she can’t see for sure but she could see that the baby’s stomach was full which shows the baby is swallowing well which is a good sign as babies with cleft palette usually struggle with their swallow.  I was so relieved; I felt like I could now be positive and start planning for actually having a baby.

They also gave a more accurate due date, so baby was due on 5th June 2012 which seemed like an age away, little did I know that from that point onwards time would just fly by!

I also felt able to start telling people about the baby.  There were a few key people we want to tell before we generally spread the word.  So over the next weekend we rang the most important people.  It’s amazing how different people react, some people seem quite uninterested, but I think that’s more because they are in a completely different place in their lives.  But there were other people who I told who really surprised me with all the questions they asked and how pleased they were for us.  Once we had spoken to everyone we wanted to tell ourselves we did what everyone seems to do in the day and age and posted a scan photo on facebook and that seemed to spread the word to pretty much everyone we knew!

Monday 21 November 2011

11 weeks ~ London neurology appointment

One of the best things that happened to me in my epilepsy treatment was being referred up to London to an epilepsy specialist.  I had felt like my neurologist at my old hospital wasn’t listening and got the feeling he didn’t know a lot about epilepsy, which after seeing the consultant in London turned out to be true.  I feel bad taking up the time of such a specialist when all I really wanted was to see an epilepsy nurse.  But looking at things now I feel like I have a plan for the future and that is all thanks to my specialist and the team at the National Neurology Hospital.

I had an appointment with the epilepsy nurse in London, my Mum came with me for support.  At work I was constantly being told what a risk I was to the children, not to pick them up, not to be left on my own with them.  I started to think that I could never look after my own baby, all that time just my baby and me and the risk of me dropping them.  The epilepsy nurse made me feel so much better, he pointed out that in comparison to a lot of people’s epilepsy mine was well controlled, one seizure a year wasn’t going to put my baby at a huge risk and we talked through some of the things I could do to reduce the risks which is something I’ll talk about a bit later in this book.  They also took bloods to check my medication levels in my blood, as with all AEDs but Lamotrigine particularly your medication levels in your blood can drop significantly due to having an increase in fluid in your body and changes in your metabolism.

Mum then took me to Westfield’s to go shopping for Maternity clothes.  I hadn’t bought anything so far for this pregnancy.  I guess part of me thought that this pregnancy would never work out.  I had read somewhere 1 in 6 pregnancies ends in miscarriage and I knew the first 12 weeks were the highest risk, having had a seizure and with all the problems epilepsy can bring I just thought it would all end in tears and I didn’t want to tempt fate by going out and buying things.  But it was my birthday coming up and it made sense to be bought maternity clothes for it so I decided I had been being silly.  We had a lovely day, I spend a lot of time with my Mum but often it’s while she’s working or while we’re busy with other things, but spending some time just the two of us was wonderful.  Talking to my Mum and actually buying maternity clothes got me thinking, we had decided not to tell Rich’s parents until after the scan but somehow that seemed unfair and I suddenly got scared they would find out through someone else somehow.  So after talking to Rich we decided to tell them.  They seemed very happy, it would be there first blood grandchild and they seemed to be excited and happy for us.

A lot of it is common sense, I won’t bath the baby on my own, I’ll avoid carrying the baby up and down stairs too much by having changing things downstairs as well as upstairs and if I do carry the baby upstairs I’ll carry them in a car seat.  Then things like changing the baby on the floor and breastfeeding while sitting on the floor.  I won’t let the baby sleep in our bed as my medication makes me sleepy.  I also planned to get a buggy with dead breaks but that was going to prove a little difficult…

Monday 14 November 2011

Information on Epilepsy, Birth Defects and Inheritance

Here’s a bit of information from the epilepsy action website to put the risks of AEDs on the unborn baby and inheritance of epilepsy in perspective…
Anti-epileptic drugs and the epilepsy itself put the baby at a slightly increased risk of major congenital malformations that need medical treatment for example spina bifida, a hole in the heart or cleft palate.  The risk seems to be greatest during the first three months of pregnancy.

One or two babies in every hundred born to women without epilepsy have a major congenital malformation.  If you have epilepsy and don’t take AEDs the risk is around two in a hundred

Different anti-epileptic drugs carry different risks and there is an epilepsy pregnancy register to gather more information about the risks, sodium valproate in particular is associated with an increased risk of major birth defects.  The risks are increased if you take more than one type of anti-epileptic drug.

Babies born to women with epilepsy have a slightly higher risk of having a minor congenital abnormality, for example, small fingers, small toenails, and facial abnormalities such as wide spread eyes.

When planning a family all women in the UK are advised to take a folic acid supplement. It is recommended that women with epilepsy take 5 mgs of folic acid every day for at least three months before you conceive and continued throughout the pregnancy. Folic acid is a vitamin which helps protect against neural tube defects such as spina bifida.

In the general population 1 in 103 people have epilepsy. Less than one child in every 10 born to a parent with epilepsy will develop epilepsy.  There are three different ways in which epilepsy can be inherited:
  • A person’s low epileptic seizure threshold may be passed to the next generation through the genes.
  • Some types of epilepsy seem to run in families, for example, juvenile myoclonic epilepsy.
  • Epilepsy can be one of the symptoms of another inherited medical condition, for example, tuberous sclerosis.

10 weeks ~ Emma, my friend and midwife student at Epsom

I went to our new doctors’ surgery 2 days after moving to get the ball moving as time was ticking by and I needed to see a midwife as soon as possible.  They were very helpful and the doctor faxed a referral to Epsom Hospital to make sure I was seen quickly.  She explained they like women with high risk pregnancies to have their first appointment at the hospital where they can decide whether to monitor your pregnancy in the hospital, community or a mixture of the two.  All pregnancies of women with epilepsy are considered high risk, which I see as good thing as it means you are more closely monitored.

As I had decided to have the baby at Epsom hospital I knew there was one other person I needed to tell, my friend Emma who I had known since we were 2 and a half at nursery together, we had been through a lot in the past and had had periods where we drifted apart but whenever we did see each other it was like we hadn’t been apart.   Emma was doing a midwifery degree and I knew she was based at Epsom Hospital, I didn’t want her finding out I was pregnant from picking up my notes one day!  So we went out for dinner and I told her I was pregnant, she seemed really excited.  She also said she needed someone who was a more complex case as a case study for her final year; she would follow my progress through the whole pregnancy to whatever extent I wanted.  It seemed like a really good idea, from a practical point of view having someone who knows what is going on in all areas of my care could only be a good thing, but also more importantly Emma had been such a big part of almost the whole of my life, as well as both our families having been so close in the past, having her there at the birth of my baby would be truly special.

So I had my first midwife appointment, my booking appointment, at Epsom Hospital.  I had spent a lot of time in Epsom Hospital, be it A&E when I fell off my horse (it was just round the corner from the stables) or on Casey Ward looking after children from work and I actually liked it as much as you can like any hospital, it was always very busy but somehow things at least got done.  But walking into the maternity wing of a hospital is very different somehow.  It was a very busy waiting area filled with women at different places in their pregnancies as well as mothers with babies and toddlers.  It somehow made it all very real, that would be me over the next few months…

The appointment went so much better than my last midwife appointment.  They were really helpful and gave me lots of advice about pregnancy, some of which seemed to contradict the last midwife such as it was perfectly safe to have the flu jab at any point in pregnancy whereas the other midwife said I had to wait till I was 12 weeks.  I decided to go with what the Epsom midwife said as she seemed to be a bit more clued up, so I made sure I booked a flu jab as soon as I left. They also really listening to me about my epilepsy, they seemed to take it all on board, both the medical side and the fact that I was pretty scared about pregnancy and looking after a baby while having epilepsy.  They didn’t pretend to know more than they actually knew and just reassured me that I would see a consultant at the hospital very soon and that there was no reason it wouldn’t be a straight forward pregnancy. People quite often ask me questions such as does your epilepsy medication affect the baby and could the baby inherit epilepsy? 

I take Lamotrigine which is one of the safest medications from this respect in pregnancy.  However because I am on a higher dose the risk of a birth defect is in increased, so the risk in lower doses is approximately 2.5% and in higher doses is 6% so I fall somewhere in between.  But I wouldn’t reduce my medication because when I do have a major seizure I go very blue and I am at a high risk of injuring myself and my baby.  Reducing or stopping my medication wasn’t even something I considered as I haven’t really been seizure free so the risk of having a seizure seems to outweigh the benefits of stopping the medication.

They don’t really know why I have epilepsy but it could be due to a low seizure threshold so the possibility of my baby inheriting it is possible but the risk is still small and at the end of the day there are worse things to suffer from so I am not going to live worrying, if they do have epilepsy I will be there to support them just like my Mum was there for me.