April 2012

Me and Joel went for our 12 week scan on 12^th April 2012, we were apprehensive, I was scared but I was excited at the same time as I just wanted to see our baby and be told everything was ok. We had our scan but they didn’t give us the news we wanted to hear, they told us that our baby had abnormalities. They asked us if we wanted to see the scan while they explained it to us, we said yes, of course we wanted to see our baby. They told us that our baby had exomphalus and a cystic area in the lower abdomen possibly an enlarged bladder. They never printed us off a scan picture; I don’t know why even though we had paid to get two, they just refunded our money. When the sonographer had left the room I rang my mum and asked her and dad to come down to the hospital to us, I wouldn’t let them discuss anything else with me until I had them with us. They sent us to prenatal diagnostics to discuss things with them like what caused it, why it was there, they told us that it was possibly linked with a chromosomal abnormality and recommended that we had further tests to rule these out. They made an appointment for us in oxford at john Radcliff hospital for the 16^th April 2012.

On the 16^th April 2012 I went to oxford with mum and dad as Joel had just started his new job and couldn’t have the time off as he had to do his training. Dad came in with me while they did the counselling with me, I told them I wanted to have the cvs done. We then went back in to the waiting room until they called me through to have a scan and have the CVS done. Dad came with me as I wanted his hand to hold on to. They tried to scan me 1^st but couldn’t see anything as my bladder was so full, they sent me to the loo and I couldn’t get out of that room quick enough. I went back in and they did the scan, my baby was being an accoward bugger, just like me, it was laid on its belly, I wanted it to move but the furthest it moved was on to its head and was doing headstands, it just wouldn’t keep still.  Dad was amazed by the whole scan, dad watched intently while they did the cvs; I sat and looked at the screen focusing on my baby trying to think positive. I was going to ask for a scan picture at this appointment but with the pain that I was in from the CVS, I had forgot all about getting a scan picture, it wasn’t until on my way home that I remembered about it and my heart sank. They told me I would get the initial results back on the 19^th or 20^th April. However they rang me on the 17^th April.

On the 17^th April 2012, the hospital rang me to give me the results, they asked me if I wanted them over the phone, I told them it depends what they are, they urmed and arghed and told me it was my decision. I was going to get Joel from the train station and go down to the hospital with Joel to get the results but couldn’t as they finished at 4.30pm and I knew Joel wouldn’t be back in time. I sat there and felt I had to have them, I couldn’t not know the results knowing that they had them back. I was sat at home on my own so I told them just to tell me, they asked me to confirm my full name and date of birth of which I did. They then said I’m sorry it’s not good news, your baby has got Edwards syndrome. I felt like my world had stopped, the hospital booked me an appointment for 18^th April 2012 to go and see them and discuss things once again. I rang my mum and told her, she got Joel from the train station and bought him home. I got Joel to come and sit with me, I just looked at him, told him I was sorry, I had the results back from the hospital and that our baby has got Edwards syndrome. I just broke down in tears in his arms, we had a chat, I told him I couldn’t go through with a termination as I wouldn’t be able to  live with myself and that we would always have all the what ifs, how long would it have lived, what would it have looked like. I said to Joel that I felt like I had to give this baby a chance even though I knew it will die at some point, but I will just be grateful for that time with our baby and just to see our baby. We eventually went to bed after we had had a shower; we just laid there in each other’s arms and cried ourselves to sleep. It felt like our hearts had been broken in to a thousand pieces. I think it must have been about 11pm or midnight before we fell asleep. I woke up at 3am, laid in bed until 4.30am and had to get up, I just couldn’t cope with laying there staring at the 4 walls in a dark room, it was driving me mad. So I got up, along with my laptop and mobile phone, I put the television on and lay on the sofa writing this. I believe I have to give our baby a chance as I can’t bring myself to play god, it has lived this far and only 5% of babies get this far so there is no way I feel I can bring myself to just  give up on our baby now. I know when I go down the hospital they will try and push me towards a termination as they just see my baby as incompatible with life but just because they want me to give up I’m not doing it. Joel got up at 5.20 am to get ready to go to work, he panicked because I wasn’t in bed when he woke up, he came down to see where I was, he looked at me and said what are you doing up at this time,  I told him I couldn’t sleep so I had to get  up. Joel then  carried on getting ready for work, then came down and gave me a cuddle and a kiss, and  told me he loved me and he would never stop loving me, he sent me back to bed at 6am and told me to try and get some sleep. I feel asleep at some point, I think I cried myself back to sleep and woke up at 8.20am, sitting in the house on my own I felt so alone, I got dressed and put one of Joel’s t-shirts on I then put his necklace on just so that I got some of him with me when I have to go to the hospital.

On 18^th April 2012, I went to the hospital with mum and dad to speak to the specialist midwife about the results and what to do next. I was told that our baby defiantly had Edwards syndrome, it was unlikely to be  partial and its very unlikely that its mosaic either, but got told the only way to rule out a mosaic results is to have an amniocentesis done at 15 weeks or to have another CVS. I told them I didn’t want another CVS done; I would rather have an amniocentesis done. They have booked me in to see an obstetric consultant on 24^th April. This is to have a review done, another scan and to have another discussion, I don’t care what they say I’m not going to give up on my baby, if nature takes it away from me or I miscarry then that is fine I can accept that easier but anything else I cannot accept, and I won’t do anything that I don’t want to do. The biggest question that I want answering is why but this is a question that no one can answer for me, all they say is it’s just one of those things, it’s bad luck and it’s not your fault.

On the 24^th April 2012, we went to the hospital to meet the consultant. The consultant is lovely; he is a German man and is so down to earth.  He did another scan and says all looks well, baby very active and likes doing headstands. He printed us off a picture so at last we finally have one to keep and treasure forever. He told us that we have a 95% risk of losing our baby during the pregnancy, we have a 30% risk of a stillborn baby and that I also have an increased risk of developing pre-eclamsia but this is a risk that I am willing to take just to know that I have given our baby the best chance I can give it. We had a good chat with the consultant they have said they won’t operate on our baby nor will they use a ventilator if our baby needs help with breathing, they say it’s all down to money but I believe they are just saying this as they class all baby’s with Edwards’s syndrome incompatible with life. However we have been told that they will give our baby fluids, pain relief and that it will be palliative care. Been speaking to Mel again who is a big help to us at the moment as she lost a little boy to Edwards, so she has been able to talk to us and give us advice as well as put us in contact with other people who chose not to carry on with the pregnancy. Mel also put us in contact with the co-founder of the SOFT charity who are having a weekend conference on the 5^th and 6^th may 2012. We wanted to go but didn’t think we could financially do it but they have said they will pay for us to go so we are defiantly going to go. We will meet other people who are in the same situation or have been in the same situation as us so we believe that it will give us a better understanding and will do us good just to get away for the weekend too. The hospital rang me up with some more appointments, we have our 20 week scan on 23^rd May 2012 and we will see the consultant again on the 22^nd June 2012. When we see the consultant again in June we will get given an appointment to see the paediatrician to discuss our baby and to ask any questions that we have. I see my midwife again on 2^nd May 2012.