|
charlies bear greeting cards |
|
There was so much that I didn’t know, when I first became pregnant. I did know a little about Downs syndrome. I knew that a Downs syndrome baby would need extra care and support. I knew that a Downs syndrome child would need some special help and support with education, to be able to achieve as full a potential as possible. I felt that these were things I would be able to deal with, if told that my baby had Downs syndrome after he or she was born, but I preferred not to know during pregnancy. I knew that I would never have a termination and that I would love my child and be prepared to provide whatever was needed, when he or she was born. For these reasons, I chose not to have any kind of antenatal testing.
With my first pregnancy, I miscarried at 9 weeks. This was extremely painful and frightening at the time, and made me very sad, but I became pregnant again quite quickly. After that first loss, I was scared of it happening again. I had heard and read about recurrent miscarriage and about missed miscarriages and was worried that I might lose this new baby. It made it very hard for me to be positive about my pregnancy. So I asked for a dating scan, to check whether my baby was alive and growing correctly. And this is where I began to learn how very much I didn’t know.
Imagine our elation, my husband’s and mine, when we saw our baby on the scan for the first time. I hadn’t been able to get a scan until I was nearly 15 weeks pregnant and we had been so worried all that time, but there it was on the screen – a little baby kicking its legs and wiggling, not a lot, but moving. I remember that I could see the vertebrae in its back, as clear as anything. And there was a heartbeat. Suddenly, it was real to us – we were having a baby. We felt that elation for a few minutes.
The first thing I didn’t know was that, in a dating scan, one of things the sonographer checks is the nuchal fold. Our sonographer asked her colleague to come and check something with her. They were muttering to one another and we didn’t know what was happening. I started to worry that there was a problem, and how right I was.
Our baby had a large nuchal measurement, which the sonographer wanted checked by a consultant in pre-natal diagnosis. This meant sending us to the pre-natal diagnosis unit at the main hospital. We asked what was the matter and what did it mean, but she was very reluctant to tell us anything at all. Eventually, she did tell us that our baby might have Downs syndrome or another condition, but she couldn’t tell us anything for sure without us seeing the consultant. She made us an appointment for the next morning.
In the car, on the way home, I sat there wanting to die. There seemed no point in going on living – I had lost one baby already and couldn’t bear to lose another. The one thing that made me stop thinking that way was realising that my husband would then lose two babies and his wife as well and I couldn’t bear to do that to him.
I can’t describe to you how I felt that night and the next morning. I remember trying to eat some food and feeling like I was chewing cardboard – I was hungry (after all, I was pregnant) and yet I could barely summon the energy to chew, nor taste the food. I am sure now that I went into shock that day and didn’t emerge from it for some time.
We were at the hospital a long time the next day – waiting for a couple of hours or more before we finally saw the consultant. He scanned me and confirmed that our baby had a large cystic hygroma (a sort of growth at his neck), which could indicate one of a number of problems. He recommended we have Chorionic Villus Sampling (CVS) to check for chromosomal abnormalities, but first sent us to talk to a midwife-counsellor about the possible causes of the cystic hygroma. And I found out how much more I didn’t know.
I hadn’t know that there were two other relatively common chromosomal abnormalities, besides Downs syndrome, both of which were described as “incompatible with life” due to the severe and multiple development problems for a baby’s major organs – heart, stomach, bowel, diaphragm, brain, etc. These were Trisomy 18, or Edward’s syndrome, and Trisomy 13, or Patau’s syndrome. Also, I hadn’t known that Downs syndrome (Trisomy 21), while it could cause a baby to be mentally disabled and have some health issues, could also cause a baby to develop without kidneys or a stomach, or with the chambers of the heart not joined up. All of these conditions would cause a baby to be unable to survive even for a few seconds outside the womb, could cause a baby to die during the pregnancy, resulting in miscarriage or stillbirth, or could allow a baby to be born and to survive for maybe a day, a month, a year, but not beyond childhood. And any of these conditions could have caused my baby’s cystic hygroma. On the other hand, it could be caused by some treatable or operable heart problem. The CVS would tell us if our baby had one of these Trisomies or one of certain other chromosomal abnormalities.
My husband and I were left alone to talk about what we’d been told and what we wanted to do. We decided to have the CVS, hoping that it would rule out anything very severe, but already we began to talk about the possibility of termination – so unthinkable only a matter of days before. After all, I had had a miscarriage, which had been such a sordid, painful and frightening experience for me. We were told that, if we wanted, part of the sample could be tested using a fairly new technique which could identify a few of the more major chromosomal problems, including the Trisomies, in just 2-3 days. The normal testing procedure involved growing cultures from the cells, and takes a couple of weeks.
We were taken straight back to the ultrasound room, where the consultant prepared to perform the CVS. He explained to us what would happen, and the possible problems that could arise. He might be unable to take a big enough sample for testing by both the new test and the culture test, in which case they would only use the culture test. Also the CVS procedure itself carried a 1-2% risk of miscarriage. The consultant recommended the CVS because the risk of a very severe problem was higher than this.
The consultant scanned me to locate the exact position of my baby and the placenta. He injected some local anaesthetic into my belly and then, using the ultrasound to guide him, he inserted a long needle into my belly and into my baby’s placenta. He withdrew a large syringe full of fluid and then it was over. All there was left to do was to go home and wait.
My husband and I spent the next couple of days together, going for one of our favourite walks in the woods together and doing other things that we found relaxing and peaceful. We talked a lot about what the results might show, and what that might mean for us. We spoke to our parents. By the time we received a call two days later from the hospital, we knew what we would have to, if it came to the worst.
My husband took the call and a midwife from the hospital told him that, unfortunately, our baby had Edwards syndrome, Trisomy 18. She asked us to come in that afternoon to speak to the consultant obstetrician about our options. We went in at 4 o’clock. He explained all he knew about Edwards syndrome – that it was associated with severe and multiple abnormalities of the major organd, that it was termed to be “incompatible with life”, that the chances of the baby surviving the pregnancy were low and those of it surviving much beyond birth, minimal. He was surprised that it had survived even so far into the pregnancy. Our options were to go home, continue with the pregnancy and see what happened or to terminate. We could take what time we needed to decide. But I sincerely believed my baby wasn’t going to survive more than another few weeks, that I would have a late miscarriage or a stillbirth sooner or later. I had had a miscarriage at 9 weeks and couldn’t bear for this little baby to go through that. Even if it survived close to term, I couldn’t bear the thought of it having a short and perhaps painful life in a hospital, wired up to life-support machines and maybe being forced to stay alive. It didn’t fit with my beliefs about what life and death are about. I am a Christian and I believe that when we die we will be with God, loved and cherished and cared for beyond anything that is possible on this earth. For me, death in itself is not an evil thing to be feared but a part of life to be accepted when the time is right.
We were taken to see a midwife who gave me a pill to take. I can’t remember now what I understood this pill to do. Later I was told by another midwife that it would have cut off the flow of oxygen to my baby, allowing it to go to sleep and not wake again. We were told to come back to the hospital two days later, so that my baby could be born. There was no option of a surgical termination, for which I am glad. I was to be induced and give birth to my baby naturally.
It was Sunday morning, 13th April 2003, when we returned to the hospital. It was very quiet at the maternity unit and we were taken to a room well away from the maternity ward and delivery suite. We were there for a long time. I suppose the midwives were busy elsewhere, though I didn’t think much of it at the time. A midwife did come early on and talk to us about what would be involved. She warned me that normally it could take 12-18 hours for the delivery. I took everything in calmly and quietly, asking questions and listening to the answers. As I said earlier, I think I went into shock after that first scan and I was still in it that day. My husband was incredibly impressed by my calmness and acceptance of all that was happening. Perhaps it was harder for him, seeing me going through all this as well as dealing with his own emotions. I don’t remember feeling anything much at all that day, emotionally. One thing I do remember is realising that, until then I had somehow been thinking in terms of a “procedure”, a “pregnancy” – the midwife spoke of the “birth” and the “baby” and it suddenly felt a lot more real.
The evening before, we had discussed what we would call the baby – we wanted to give it a name, but we didn’t know whether it was a boy or a girl. We had asked to know from the CVS test, but hadn’t been told and didn’t know if we would ever find out. So we thought maybe we should choose a unisex kind of name and, as a first thought, I suggested Charlie. On that morning, we asked the midwife if the test had shown the sex of the baby. She looked at my records and said it was a boy! I asked my husband what he thought about a name, and he said he liked Charlie, so we should stick with that.
Eventually – it must have been about 11:30am – the midwife came to insert some pessaries into me, to start the induction process. This was supposed to be the first of perhaps 5 doses of the drug, so she left us alone again to wait and see if anything happened. After perhaps half an hour, I started to get quite intense cramping pains. Please remember that I was only 15 ½ weeks pregnant – I had been to no antenatal classes, hadn’t got to that part of the pregnancy books yet and really knew nothing much about what to expect in labour. I had been told I would probably have several hours to wait for something to happen. So I didn’t realise that these were contractions that I was feeling already. They were very intense and strong and I had to walk up and down the corridor outside our room to be able to bear the pain. The midwife was nowhere to be seen, obviously assuming that nothing would happen for some time. After a while, we rang for her and she finally came back and was very surprised to find me in such pain. I had already been to the toilet once and felt the need to go again. She let me go, giving me one of those cardboard things to go in. It was then that my waters broke with a great gush.
I went back to the room and was laid down on my back on the bed. She kept trying to get me to stay upright, but I kept sliding down. The pain was so bad, I started hyperventilating and my hands started to go numb. She gave me gas and air and told me how to use it, but it took me a while to get my breathing back under control again. When I did, the gas and air helped me to regain a little control. At last, she asked me to start pushing, but I didn’t understand that I had to push with everything, and I was worried about soiling the bed so I held back. It felt a little humiliating to have to push out everything and unpleasant to think of my baby being born into the mess, but the midwife promised that she could clean things up as they happened, which reassured me slightly.
At 1:39pm, our tiny boy was born asleep, weighing just 40g. He was taken away to be cleaned up and have some polaroid photos taken. There was more pushing and the placenta came out, then after I thought it was finished more cramps and finally the last bits of placenta came out.
Later the midwife brought one of the photos back and asked us if we wanted to see it, telling us not to be worried that his eyes looked strange – they were still filmed over, so looked sort of grey – but otherwise she said he looked fine. We took the photo and he did look strange, because of the eyes and the fact he was very red, but he was shaped like a little baby, so we decided we would like to see him, although I’d been scared about this. I needn’t have worried – after the strangeness passed, I realised how beautiful he was. He could have fitted into my hand, and yet he had tiny fingers and toes, a strong jawline and what looked like a gentle smile on his face. I touched him with my finger once, trying to stroke his head, but he felt slightly sticky and I became terrified that if I held him or touched him anymore, I might hurt him somehow. So I didn’t dare touch him again – I really regret that I never held my baby in my hands, but I couldn’t bear for anything else to hurt or damage him.
The hospital chaplain came to us and was really lovely. She blessed Charlie and named him, and we played a CD of “The Lord bless you and keep you” by John Rutter. My mother- and father-in-law also came to see us. They didn’t see Charlie, but they saw a picture of him and they were so supportive, having lost a baby at delivery and also a young son, aged 3, themselves – so they really understood, and were very impressed with how well we were looked after, compared with how things had been 30 years before.
I don’t remember when we got home, but my in-laws came and had fish and chips with us, and talked about ordinary things, which somehow helped a lot. Sometime later, the shock began to wear off and the pain really began. It took me a long long time to recover emotionally from Charlie’s loss. We went on to have another baby – a healthy little boy – just a week after Charlie’s first birthday, and now it’s nearly 4 ½ years since he was born. We suffered a further early miscarriage when trying for another baby, but went on to have another healthy baby boy in June 2006. Even so, the sadness is still there, normally less sharp except when something triggers a memory. Charlie and the two tiny babies I lost so early remain in my heart, even as I believe they are held close in God’s heart. They are always with me and one day I will go and be with them for ever.
|
|
Charlie’s story |
Send mail to alexandra.barnes@bigfoot.com with questions or comments about this web site.
|