Friday, 27 February 2004
Myself and Mark were due at the hospital early afternoon for our 20 week scan
Everything had been OK at the 12 week scan and therefore I was a little nervous but assumed everything would be OK. At this time I was, in fact, 22 weeks pregnant. Before going to the hospital we went to Pizza Hut for lunch. I remember feeling so proud of my ever growing bump. I suppose this was the first time I had noticed that I really did look pregnant and we really were going to have a baby. We arrived at the hospital, waited and then the scan began. We looked at the baby; its arms, legs etc. The next thing I knew was the Sonographer called someone else in to have a look at the scan.
The screen showed a large perfect circle at the base of the baby's spine. A Paediatrician was called and then for the first time Spina Bifida was mentioned. Another Consultant was called to also take a look. We were taken to a small room and left on our own whilst arrangements were made for us to attend at Queens Medical in Nottingham for further more detailed scans. I remember feeling very scared. The appointment was made for Tuesday, 2 March.
I cannot describe how I felt as we left the hospital; perhaps numb is the right word. How were we going to cope for 4 days at home knowing that we could possibly lose our much wanted baby.
Why had this happened to us? Had I done something wrong? I suppose I already started preparing myself for what was going to happen. I remember lying in the bath and trying to cover my bump with bubbles so that I could not see it. I did not want to have shower like usual as I did not want to wash my bump. I knew that I was starting to reject the baby. Every time the baby kicked I cried. I was crying because I was giving up on him/her before we knew anything definite.
I don't know how we managed to get through those 4 days, but we did. Lots of tears, sadness, what ifs; and great support from family and friends. But we decided that we did not want to bring a baby into the world if all it was going to do was struggle. It would not be fair on that child. Our only concern was if it was a grey area and they could not tell us for definite how severe the disabilities would be.
Tuesday, 2 March 2004
We arrived at Nottingham and waited our turn. I felt sick, scared and frightened for our baby. Then we were called through. The Sonographer took dozens and dozens of scan pictures and the scanning seemed never ending. I never looked at the screen. Then we were told that the baby did have Spina Bifida and we were asked to wait and see a Foetal Specialist. I so wanted to just run away and pretend this wasn't happening to us. The wait was awful and the longer we sat there the more I wanted to just leave. I could not believe this was happening to us. We were taken to a quiet room at the end of a corridor and the Specialist arrived.
I cannot really remember too much of what was said. I so wish I had listened more now. The words severe, limited limb movement, wheelchair, no quality of life, lack of bowel control were all mentioned and "recommend a termination". At no point can I remember was it suggested that I proceed with the pregnancy. I was told that I would have to give birth naturally because this was of less risk to me. What did I matter; I was about to lose my baby. The worse however was yet to come. It was explained that because of the baby being at 23 weeks gestation they would have to inject into the baby's heart to stop it beating. This was so that the baby did not struggle and become distressed and fight for life. After this, I cannot remember much. Nothing anyone said could now make things any better, nothing was going to get worse than this. They could not hurt me anyone. I shut my mind down, called in the defence barriers and went into autopilot.
I had to sit there and wait, knowing what was going to happen. I had not prepared for this, how was I going to cope? What had this baby done wrong? The procedure took about an hour. I had to lay very still and just focused on my husband and the ceiling lights. I did not once look at the screen. I remember being asked not to cry as I needed to lay very still. I was not even aware that I was crying. Then it was over. I had lost my darling baby and we left the hospital. Much of the journey home was a blur. I just sat there. I don't remember having any feelings or thoughts about what had just happened.
I had to attend at our local hospital on the way home to take some tablets so that my body would start preparing for labour. There I met with a midwife called Jane. She would be looking after me when I delivered the baby. I was told to come back to the hospital on Thursday as the tablets needed 48 hours to work. I couldn't believe they were going to make me carry this baby around with me for another 2 days. I just wanted to have the baby now and get it all over and done with. We were sent home with a Sands pamphlet but no-one actually spoke to us about things we would like to do and option we might have.
Thursday, 4 March 2004
The journey to the hospital took all of 5 minutes. I so wished the journey would never end and that we would never get there. I did not want to do this. I knew it was going to hurt and I was scared. I had not had a baby before and really did not know what to expect. Much as my husband supported me and wanted to be there for me, I really wanted to do this by myself. I wanted to be on my own when the baby was born. I did not tell him this though. I did not want to see his pain. On arrival I met with Jane who explained what was going to happen and about pain relief. I was given the first stage of medication to start the labour at about 8 am.
I told Jane I did not want to see the baby, I wanted it taken out of the room straightaway, but if it was a girl her name was Chloe and if it was a boy then it was Joseph. Nothing much really happened for a couple of hours and then the pains started. I was given pain relief and much after that was a blur. I was so drugged up. I was given a second lot of medication around lunchtime. I was in and out of sleep and it felt like this wasn't really happening to me. It was like I was watching myself. At 3pm Jane's shift ended and I was introduced to another midwife. I cannot remember her name. Jane had been fantastic and I really did not want her to leave me. I then felt I wanted to use the toilet so the midwife got me out of bed, closely followed by the gas and air; but I couldn't go and so got back in bed. I told the midwife I really did need to go to the toilet and so she said she would fetch a catheter. When she came back I asked Mark and my mum to leave whilst the midwife carried out the procedure.
I never did go to the toilet. As soon as the midwife put in the catheter the baby was born at 4.10pm, weighing 1lb 10oz. I had had my wish and had been on my own when the baby was born. As asked the midwife took the baby out of the room.
Mark and my mum then came back in and I told them the baby had been born. I don't remember much else. I don't know how I found out it was a boy. I must have asked. So there we had it, our darling son Joseph.
Shortly after, I remember going outside to have a cigarette, laughing and then being sick all over the front doors. Such irrational behaviour from someone who had just lost their baby!
The midwife then said that my Mum had asked if she could see the baby. To my surprise I said that I wanted to see Joseph first and the midwife took me over to a room just opposite the one I was in. There was a tiny moses basket with my darling son inside. I cannot remember how I felt. I cannot remember if I cried. I cannot remember if the midwife was there. I cannot remember being asked if I would like to hold him. Why did I not unwrap his blanket and look at every part of his body. I don't know. I remember I did not want Mark to be there with me, I wanted to be there by myself. I cannot remember if I touched him. This was all so surreal. What was I supposed to be doing, I didn't know, I had never had a dead baby before. I don't think I stayed in the room very long.
Why was I not encouraged to hold Joseph, pick a hat out for him, take some personal photographs, given encouragement to make this moment special. Things could have been so different if I had had a midwife who used a little gentle persuasion and explained to me that I would never get to do anything for Joseph again and that now was my chance. I was so high on drugs I didn't really think about anything like this. I was scared and I suppose this held me back. I wish that myself and my husband had spent time with Joseph as a family. I wish I could have just seen someone like a counsellor prior to Joseph being born just to discuss our various options before I was so high on drugs. I was in no fit state those first 24 hours after Joseph's birth to make any decisions. It is only now 2 years on that I carry so many regrets for how I dealt with the situation. I should have made the most of Joseph whilst I could. I would have liked to have had just one midwife throughout, but I accept that this is not always possible.
Before we left the hospital on the 5th March we were asked about funeral arrangements and post mortem. We agreed to a post mortem because we wanted to know if there was anything else wrong with Joseph and whether this was a genetic problem. As for a funeral, because of Joseph only being 23 weeks gestation and because he was stillborn we did not have to have a funeral, and because he was under 24 weeks gestation we did not have to register his birth. Mark and I felt we could not cope with a formal funeral and it was agreed that we would have a service at the hospital and then Joseph would be cremated. It would have perhaps been nice to have discussed these matters with the Chaplain. He/She could have explained that a funeral would be our last chance to say goodbye. An introduction to the Chaplain would have been nice.
When we left the hospital all I took home with me was a little book with Joseph's footprints and his birth details, and 3 polaroid photos. Not much to show for my darling son.
Things could have been so different.
Joseph 4th March 2004 © Lisa B