When Paul and I found out that we were expecting it was the happiest time of our lives we were so excited, the very next day I got in contact with the doctors and was booked in for my first midwife appointment.
A couple of weeks later I went to the midwife for what is called your booking in appointment where she went through many things with me such as my families medical history and she also took a blood test. Everything was going well, apart from feeling unwell now and then with morning sickness we were happy and was soon counting down the weeks to our first scan where it would be the first time we would see our precious baby.
Our 12 week scan went fine and was told our expected due date would be 17th November 2012, this just made everything so much more real and straight away we started to plan for little one’s arrival browsing for furniture for the nursery and buying the odd outfit. Paul and I spent the next 8 weeks debating as to whether or not we would like to find out the sex and so after much talk, we decided we could not wait and made the decision to find out at our 20 week scan.
Time seemed to drag we were really excited to be finding out but it did soon come round. Little did we know this would be the beginning of our worst nightmare. We went into the room and I laid on the bed the first question we were asked is if we would like to know the sex and we said yes. I had butterflies because we were so excited to be finding out. After a short while of scanning, we were asked to go for a walk and were asked if I would try to eat something to get baby moving as baby was not lying in the right position to find out so we needed to try to get baby to move.
After walking around the hospital for 30 minutes and having eaten a sandwich we went back hoping baby would have moved. When we got back Paul and I were told that we were being referred to see a consultant for him to scan us.
Straight away we knew something must be wrong as you don’t see a consultant if everything is fine so after another hour of waiting we were called in. I was nervous and was quite upset as we didn’t know what the other doctor had seen for us to be here. Again I laid on the bed and the consultant began scanning he was delighted to tell us we were expecting a girl, however, he also had news for us that showed not everything was ok with our baby girl. We were told that her bowel was dilated but he was not quite sure why, he asked if I had any bleeding to which I replied no. I asked what this meant and if our baby was going to be ok, the consultant told us he was not sure why it was dilated but he told us he was not worried about it and he asked if we would come back in another 4 weeks’ time to be rescanned to see if the bowel had gone back to normal.
For the next 4 weeks I tried not to worry as we were told not to so we remained positive. The next 4 weeks went quite fast and we were back again but we were told that the bowel still wasn’t back to normal, this time we were asked if me or Paul had cystic fibrosis in either of our families to which we said no. The consultant told us he would test me for it anyway just to make sure as a dilated bowel is a sign of cystic fibrosis and booked us in for 2 weeks later to again have another scan. We were now really worried for our baby girl as to what was wrong.
2 weeks later we returned to the hospital and were told that the results were all clear so I was rescanned again this time the consultant seemed a lot more worried after seeing that nothing had changed he sat us down and told us he wanted to do what they call a TORCH test. This test was to check for any infections baby may have picked up so they did a simple blood test and we were told they would also look at previous blood tests I had throughout this pregnancy. We were sent away and were told that we would receive a phone call with the results. Another week and a half passed and I received a call from the hospital. I was told over the phone that cytomegalovirus (CMV) had showed up in a blood test I had taken back at my first midwife appointment when I was just 9 weeks pregnant so I was asked to come back in.
I returned yet again to the hospital a couple of days later. I had no idea what this virus was or what it meant so I researched it on the computer and what I read was scary and to know what it could mean for my baby was even scarier. We returned to our consultant where he explained to us in more depth as to what the virus was and what it could mean for our baby girl. After the doctor finished talking to us he asked me to lay on the bed so he could have another look at our little girl but now knowing that cytomegalovirus (CMV) has been detected he wanted to focus more on looking at her brain.
After careful scanning, we were sat down and were told just how serious this could be by being told that he thinks that it may have started to attack her brain and told us we may want to think about a termination. We could not believe what we were being told at almost 28 weeks this just didn’t seem like an option for us so we were referred to the fetal unit of Princess Anne hospital in Southampton where we would see specialist consultants who would be able to have a better look with better scanners to determine just how bad this may be for us. We had an appointment booked for the following week and for the first time in weeks we were told some positive news, the consultant who saw us could not determine for sure if her brain was affected so questioned whether or not she may have caught the virus because although it showed up in my blood it may not have necessarily spread to her so they suggested we went through with having an amnio where they take fluid with a needle through my stomach from my womb.
We agreed for this and remained positive that she may not have caught this awful virus but 5 days later I received a call to say she had caught it and she was excreting high levels of the virus. Now at 29 weeks we were back talking to the consultant as to what our options now were, Paul and I did not even want to think about having a termination if our daughter could live some sort of a normal, happy with no suffering life and so our consultant decided that I would go and have a MRI scan so they could look at baby’s brain much more closely to determine how bad this could mean for her. After having the MRI scan Paul and I decided that we would not have a termination unless the consultants strongly believed our daughter would suffer or have a poor quality of life if we carried on with the pregnancy. We were called back in 3 days after and were told that the MRI picked up many things wrong with her brain and were also told her brain looked more like a brain of what you would see of a 24 week baby not a now nearly 30 week baby.
We asked how severe they really thought this could be for our baby girl if we chose to carry on with the pregnancy and were told that we would be taking a massive risk of her living any form of a normal life and they strongly believed she would be severely handicapped possibly blind as well as deaf. We couldn’t believe what we were hearing and was struggling to take it all in. The doctor strongly suggested we consider a termination.
Paul and I were devastated and all I could think was how am I supposed to make a decision like this. Paul and I went home and spoke about what we were going to do. After spending a day at home going over everything we decided that it would not be fair to bring Daisy into the world knowing there was strong evidence to suggest not much of a normal life for her and we could not bear the thought of watching her suffer and struggle every day, this is not a life we wanted for her.
We called the hospital and told them we would like to do what we feel would be best for her and that is to not carry on with the pregnancy. That day they took our story to a board meeting of doctors to decide if they would support the termination as I was so far gone it would not be an easy decision by them but given the evidence, they also agreed that this was the best thing by her so they booked me in for a termination.
At 30weeks and 2 days we arrived at the hospital, I felt numb and was emotionally exhausted, at 14:00 Daisy passed away and 3 days later I gave birth to Daisy at 05:40 am weighing 3lb 3oz, she was beautiful. Paul and I got to spend 12 precious hours with our perfect little girl. Every day I ask myself why us? Why our little girl? It is so unfair this happened to Daisy and us. I will always be angry that the severity of the situation could have been helped if CMV was screened for early in all pregnancies as this terrible virus was detected in my 9 week blood test so we could have known about it a lot earlier on.