His developments was always a little bit on the slow side. He was late to reach all the milestones. And I found that incredibly worrying at the time. He was my first baby, I had nothing to, I had nothing, no nothing to mark, mark the standards by and therefore I read all the books and if he wasn’t doing something by the end of the, the end of the stage that they gave you I would start to worry and think something was wrong.

And this was always the way. He was late to sit up, he was late to walk, he was late to crawl, everything. Everything was late. And I convinced myself that there was something dreadfully wrong. I went through the, ‘Oh hes, hes dyslexic, hes autistic. I, I put myself through, through agonies convinced that hes got brain damage from the operation. I was convinced something was wrong. As it turned out nothings wrong, he a, hes a perfectly wonderful, normal, bright boy and hes doing wonderfully well at school. And so I put myself through all those agonies for nothing.

Hes form captain for his class for this year, which is really nice, gives him a bit of responsibility. The teachers say hes doing really well. He keeps up well with his school work. Hes a bright boy and hes very happy. Hes got, hes got good friends and he enjoys school, which is wonderful.

You had very dedicated care in Intensive Care. Always there was one nurse, at least one nurse continually with your child. And it felt very safe. And when we went back to the ward atmosphere it was different because we were sharing the nurses amongst the other babies and also you were a lot more involved in the care of your child. He no, he was no longer on the machines, on the drips. He just, he was attached to a nasal, a nasal-gastric tube but we then became very much more involved in their care. The nappy changing, the feeding, the cuddling. And it was, it was very strange to me because for the first 12 days I’d just had a baby who’d. who’d lain on the bed and not done anything and it, it was very easy really. And suddenly I was thrown into, thrown into an environment of lots of babies, crying babies and my own baby that, my goodness, I had to take care of. That was very scary.

The nurses were wonderful and they’d spent a lot of time with you but obviously they had, they had the other babies and parents to care for as well. So it was quite a, it was quite a, quite a sea change that was, coming back from Intensive Care back to the ward again.

Well, we knew that we could phone the hospital at any time, the paediatric ward. We could phone day or night if we had, we had any problems. We were very fortunate that we only live 20 minutes away from the hospital so I also knew we could just jump in the car and go there at any point if we wanted to. And we, we frequently did.

I also, I had a wonderful Health Visitor who was very supportive. We were also lucky enough to have a paediatric district nurse who came out and checked on the baby, took his, monitored his stats and was also a great support for me as well. So we were very, very lucky to have her. My GP, she was also wonderful. But having said that I did feel very, very alone when, when I first went home from hospital and I found it hard to cope.

And I thought that well, things will get better as time goes but actually things didn’t get better, I found it harder and harder to cope. Looking back now I realise that I hadn’t, I hadn’t bonded with the baby before he was born. I hadn’t expected to bring him home, it was a real shock when I did. And it was almost as if he didn’t belong to me as if he was just somebody elses baby who had been dumped on me who I had to look after. He just didn’t feel like my child at all.

It was, it was appalling to be honest because I knew that, I knew that the baby did have a very serious heart defect. He was going to need surgery very quickly after he was born within the first few days of life and we also knew it was major heart surgery and there was a possibility that he wouldn’t survive. And therefore I didn’t really plan to have a baby from that stage on. I was so afraid that we were going to lose him and I didn’t, I didn’t buy any equipment and I didn’t, I didn’t plan, I didn’t, I found it very hard to cope with and I did become very depressed. I found it hard to talk to other people about it, to have to explain it to them just made the situation seem seem even more scary than it was. So what I think, I shut down, I shut down quite a lot for the rest of the, for the rest of the pregnancy.

So, and as I say for me, I didn’t really bond with my baby at all before he was born because I was afraid to because I was afraid that I was going to lose him. So I just didn’t want to feel that I was getting too attached to him. Which is a terrible, a terrible situation to be in. People who’ve said to me since, ‘Oh wasn’t it marvellous that he was diagnosed in utero so that you knew before he was born and, yes, for his sake it was marvellous because the doctors were prepared for him. As soon as he was born he was taken to the special care baby unit and monitored and kept in the incubator and that made him, that may well have helped for, for his, for the future for him. Sometime babies don’t get diagnosed straight away and they can lose precious, precious time. But for me, I wish I hadn’t known. I wish I’d had a blissful ignorant pregnancy and really been able to get attached to my baby before he was born.

Then we had to go back to the hospital once a month for check ups. Then they put it back to once every 3 months and then they told us we didn’t have to come back for a whole year, which was, which was quite staggering and a little bit scary because I couldn’t imagine not going to the hospital for a year. But we always knew that they were there at the end of a phone if we needed them and also we could go at any time if we felt it were appropriate.

We also started seeing, because we lived so far away from the hospital, we started having 6 monthly visits to the paediatrician at our local district hospital, just to keep him in touch with what was gong on with Thomas so that if Thomas were admitted to the local hospital at any time they would have a complete, the up to date picture of what was going on with him. And we still do that now.

And so really we were, we were just totally devastated and our first thought was that that would be the end of it, wed have to have a termination, we wouldn’t be able to carry on with the pregnancy. After that afternoon we went back to, for another scan and to see the paediatric cardiologist of the hospital who is a wonderful man. He explained to us as much as he could see, he did a scan and then he explained, as far as he could what he could see was wrong with the baby’s heart and possibly other associated conditions with, problems that there could be with the heart which he couldn’t see at that stage. But he gave us the whole scenario and also the worst-case scenario which as it turned out was the case for the baby. But he also explained that the surgical intervention they could do, what they would probably do at different stages throughout his life and he also explained to us the quality of life that our baby could expect to have. And that was very important to us because at that stage you are faced with the decision, ‘Do you continue with the pregnancy or do you, do you terminate?’

And my husband and I both felt that if our baby had a good chance of having a reasonably good quality of life, a normal life then we really had no choice. We continued with the pregnancy. Which is what we did.