Introduction

For those of you who have stumbled across this blog, I feel I owe it to you to give you a brief overview of what it is going to be about so you can decide whether you want to read on.  2011 was the worst year of my life without doubt. It started out pretty well, turned 30, had a party, my husband took me to the Ice Hotel as a surprise...yep, January was actually pretty good. From February onwards however, life pretty much sucked.


We decide we wanted to start a family and I was lucky enough to get knocked up on the first try (my husband reckons he has Super Sperm).  The elation of finding out I was pregnant at 5 weeks was swiftly followed by devastation as I began bleeding and had an early miscarriage.


More sure than ever that we desperately wanted to have a family I decided to climb back on the horse (no, that is not a euphemism for my husband) and try again straight away.  Like Right Said Fred we were a one hit wonder and, bam, I was once again pregnant on the first try.


The first three months of my pregnancy were pretty fraught. I had terrible cramps and carried a spare pair of pants and a packet of Always Ultra around with me at all times, convinced that at any moment I would have another miscarriage. By the time we got to 20 weeks and were given the all clear at our scan I started to relax and dared to let myself believe that this time, things might be alright.


Of course its always the way that the minute you let down your guard, something comes along and bites you on the arse and sure enough, this came six weeks later. My husband and I had planned to go to the Maldives for one last amazing holiday before we became a family of three. We figured that once the baby came, Europe would probably be about as far as we'd ever get so we decided to blow the budget and make our last twosome holiday a special one.  Given my ever present paranoia we decided to have an extra wellbeing scan the day before we were to fly out, just to check all was ok. 


It was at this extra scan we were told that there were masses (tubors) in our baby's heart and this mostly likely meant the baby had a condition called tuberous sclerosis (TS). My husband and I had never heard of this and had no idea what this meant but less than an hour later, having poured over endless websites on google, we knew it was not good. 


The days that followed were filled with endless hospital appointments. We saw various cardiologists, desperate to get a second opinion. To hear that the sonographer had made a mistake. That those weren't tubors in our baby's heart. We saw a geneticist who specialised in this genetic condition. She explained that the outcome for our baby was impossible to predict.  They would most likely have severe fits - potentially from the moment they were born and up to 100 a day.  This would lead to them having brain damage, severe learning difficulties and autism.  We could attempt to control the fits with drugs but it was often a case of trial and error and sometimes they could not be controlled. The baby could also have problems with their brain, kidneys and lungs as tubors can grow in various organs of the body. 


She suggested we have an MRI scan of the baby's brain to see if they already had any tubors in their brain as this would give an indication of how likely it would be that they would have fits and further brain damage.  As the condition can be hereditary and my husband and I would have to undergo testing, I asked if I could have an MRI scan of my brain at the same time so that I would only need to go in the machine once. 


The results of the scan were ready a couple of days later. The geneticist sat down at the table and said "take a deep breath, I have a lot to tell you". She started with the baby's brain - it was filled with tubors to such an extent that the baby would definitely have fits and it would impact his mental development. Part of the middle section of the brain had also failed to join together correctly which would lead to further problems.  The diagnosis was absolute. The baby had tuberous sclerosis and whilst some people do live with this condition we were told that the quality of life for our baby was likely to be poor and the hospital "would support us in our decision if we decided to end the pregnancy." 


We had spent days leading up to this appointment going back and forth over what we would do. I couldn't bear the idea of losing the baby and didn't think I would even be able to cope with the procedure I would have to undergo to bring the pregnancy to an end. I kept saying to my husband I had no idea how we would ever make the decision. How we would ever know what the right decision would be? My husband said that if I didn't think I could go through with the termination procedure or live with the consequences of doing so then he would support me in that decision and we would do whatever we could to make life as bearable as possible for our little baby. For me that wasn't even an option. How I would feel during or after the procedure was not something I wanted to influence our decision. I wanted to do whatever was best for the baby, not me. I couldn't live with myself if I caused them any pain simply because I was too much of a coward to do what was right for  the baby.


We decided we would wait and see what the MRI results found.  If there they found tubors in the brain then we could not continue. We couldn't bear the thought of of our little baby suffering for even a second and the idea of watching them fit continuously was horrific.  I'd asked if the fits hurt the babies and if they are aware of them and the geneticist had explained that the babies do seem frightened when they are fitting and then cry afterwards so it obviously was not pleasant for them. My husband and I had also read numerous articles and blogs and watched endless videos of children and adults with TS on the internet and every time, we concluded that that was not the life we wanted for our child.  They asked us if we had made a decision. We nodded. We would not be continuing with the pregnancy.


She then said that my brain scan did not show any tubors in my brain.  This was then followed with a huge "BUT". I held my breath and my husband reached for my hand as the consultant explained that a tumour had been found in my neck on my saliva gland. It was totally unrelated to the tubors in the baby but it needed to be removed quickly. It could be cancerous.


From this point onwards I went into shock and I don't really remember much else of what was said during the appointment.  I understand from my husband that we agreed when we would go back in for the procedure to bring the pregnancy to an end and an appointment with a neck consultant was arranged for us to discuss the removal of my tumour.


On 17th October 2011 my little baby was sent to Baby Heaven. We were told he was a boy. We named him William.  On 20th October 2011 I gave birth to William. He was tiny and the most beautiful baby I have ever seen. I held him. It was the highlight of my life.


A month later the tumour was removed from my neck and I was given the news that thankfully, it was not cancerous. The recovery from the operation has been hard. As well as being in a very dark place emotionally, the surgery left me with severe shoulder and back pain. It also resulted in the paralysation of the right side of my face (although thankfully this has improved) and something called First Bite Syndrome which is essentially like having someone stab you in the corner of your mouth with a knife and then pour acid in the wound for the first five minutes of every meal.  As you can imagine, this has helped considerably with losing the baby weight.


They say bad luck (if you can even call the above that) comes in threes and they are not wrong. Whilst I was in the hospital having William and again when I had neck surgery, my Dad had severe chest pains. After various tests we were told he had had a minor heart attack.  I took it badly.  I felt responsible and could not face the possibility of losing someone else.  


Last month he had an angiogram and three blockages were found in the arteries to his heart, two of which have now been treated with stents.  He's stable at the moment but its left him with an irregular heart beat and some light headedness.  He needs further tests to see if this can be treated with medication but these cannot be carried out for another month and so for now, the worry continues.

The above has obviously been utterly shit. There are no two ways about it. Some days it hits me like a brick and you'll find me on here wallowing in depression and self pity and resembling something akin to Misery on a Stick. On the other hand, I don't want my little boy to think he ruined my life and assuming you only get one shot at it (or not even that if you are William), I've promised myself that I will try and find some element of humour in this utterly shit situation because, let's face it, if you don't laugh, well, you'll cry.