And he, he can explain to his friends what’s happened which is, so I’ve always been quite open with him in trying to explain what’s gone on in the past. I only showed him a photo of what he looked like in intensive care when he was, he was over 6 and they were doing a project at school of how, how I’ve changed over the years. And they had to take in a picture of when I was a baby and when I was two. And so I asked him if hed like to see it and he was, he said, ‘Are you sure that’s me with all those tubes there?’ And he was very intrigued and so he said could he take it in to show his friends at school because he thought they’d be interested in it.

Again that’s another aspect of early surgery, if you’re feeding what, what you do while, while the surgery takes place and the recovery takes place while they’re full of tubes. And I had never met a pumping machine before and luckily there was another mother there who introduced me to my appointment. Every four hours I’d go in and pump and it became the sort of lifeline, you know, it became the one thing I could do for him was to be, be doing it so that they could feed it to him but also be doing it so that when he was weller, or better sorry, I could go back to feeding again. Other than that your child is out of your hands, theres nothing you can do to help and you feel so completely helpless. The nursing staff are managing him in every way. Hes got tubes everywhere so just, even changing the nappy is hard for a mother to do because one isn’t that experienced at 7 weeks.

I have mentioned that I was breast feeding and that I pumped and when you pump a pump is far more powerful than your baby, particularly post-op, the baby’s suckling ability is very weak so I was having tremendous problems with just over milk production and I had to spend an hour in the bath just trying to ease my breasts down and it took a good three or four days for them to stop producing too much milk for him and that he couldn’t even cope with the volume that was coming out. Which was an interesting aspect which certainly none of the breast feeding counsellors had, had mentioned and when I rang up in intense pain from hospital they, they weren’t able to suggest anything to help me on that one.

Where did you get the advice from to do that?

From the National Childbirth Trust breast counselling service. Which is available to anybody who rings their help line.

And was he able to feed OK?

Yes, yes. And it’s, that’s I think I felt that it was the thing that I could do for him. It was, I could give him the antibodies that come though the mother’s milk and it was the most I could do for him. It was also the least I could do for him and so all the other aspects of problems with breast-feeding just paled into insignificance, as it was something that I really wanted to do. So I fought through that and I continued feeding for quite a long time.

The procedure, as I say, was to, to do a catheter first and then to, having determined exactly what was going on electrically, to implant a pacemaker. The operation took 3 hours. Or the whole procedure took 3 hours, which was an hour and a bit longer than they had told us it would be. It’s a tense time, you’re sitting there in, in, in the dark in the ward with every thing else going on around you but not knowing quite what was happening with your child. And, and then suddenly there they are back up. Groggy and fine, he, hed had an operation at about five, well he came up at about five thirty. He responds to anaesthetic by being quite nauseous for the first few [hours] and so he kept throwing up which wasn’t pleasant. And about nine thirty in the evening he was sent down to have another x-ray to check that there wasn’t water on the lungs and he decided he was strong enough to walk himself down which was quite something. So we walked down and there were three men in there, well actually I suppose I don’t know how old they were but they looked like they were quite ill and elderly sitting in their pyjamas in wheelchairs. One of them was too unwell to have a pacemaker and the other two had had pacemakers and the four of them all sat looking at each other and just sort of disbelief that there was this little child who’d just had a pacemaker put in. And he of course thinks that that’s the age you have a pacemaker put in. So he was a bit surprised to see all these men. He didn’t, he, he found that was exhausting and we had to get a wheelchair to take him back up afterwards.

And he had, he, he still couldn’t settle his stomach so in the end we had to give him intravenously anti-nausea drugs. And I was asleep on the floor, dozing on the floor by his cot and at about 6.30 in the morning in a room with two, two or three babies in cots and then older children as well, I heard him stir and I could feel that hed come through. And in fact he leapt off the bed or climbed down from the bed and came down and said ‘Come on mummy, let’s go. And I said ‘[son’s name], everybody else is asleep, we don’t want to wake them all up. So well have to, I’ll have to read to you. So well have to cuddle up on the bed and just read to each other quietly until it’s time to get up.

And when the consultant did her ward round at lunch time I said ‘What do we have to do to leave?’ So within 24 hours we were at home having had a clear x-ray that afternoon.

And his recovery period after that, what was that like?

Well I asked them when he could go back to school. The operation had been on a Thursday, on a Friday, sorry, and they said well he could go back on Monday if the school are happy with it. But the school were not happy with it. The school were concerned that until the stitches were out there was a danger of infection or being knocked and they didn’t want to take that responsibility. So he went back to school 10 days after the operation when the stitches had been taken out by our GP. In a, it was painless. And hes kept them in a bottle and he proudly shows people what his stitches look like.

He has always avoided anything involving stamina. So he was a reluctant sportsman. He wouldn’t, he wouldn’t really join in football games. I started an after school football club on Friday after school and just let them play in the park to encourage him to play with other children. But hed be up the far field climbing a tree rather than joining in and he, he, now he has the energy to run around after his friends and do it, so it’s, it’s improved his quality of life enormously. He went skiing within 3 weeks of having the pacemaker operation for the first time in his life. And he certainly couldn’t have done that before the operation.

So to see a child afterwards have energy and as I say pink cheeks and big eyes whether hes, was a normal boy and very active and not paying attention and not concentrating and whether turning 7 has changed that or whether it’s the pacemaker hes, just hes concentrating. Hes just a whole new boy. Cycling all over the place, just living life to the full.

One of the other aspects of cardiac babies that I was told by a senior registrar ‘en passant’ was that they often are very small and don’t grow for a long time. But that I shouldn’t worry about that, that it would all right it’s self sort of by 3 or 4 years. And again you didn’t, I didn’t want to hear that at that time. But he stayed in baby grows for age 3 months until he was a good 6 months and in the 6 month ones until he was a year and he was always small. And it’s only now that hes turned, just turned 7 that hes in the taller part of the class. So he was always in the 25th percentile or smaller and it was only when he sort of turned 3 or 4 that I remembered what that senior registrar had said. And took comfort in the fact that in time hed just be normal.

So whereas everybody was saying ‘Oh, at two hes this height and therefore hell only be 5’ 7 when hes an adult and I kept thinking ‘No, it’s not going to work for him. And now hes tall and well have to see.

The first few times when you have a new baby and you don’t know your way around and it all seems very cold and overwhelming and very distressing were hard. And now if I ever see a mother who’s obviously in that state I try to reassure her and say ‘Look, you know, heres my son, it’ll be fine, you’ll be OK’ Because it is just all overwhelming and it just made it so much easier to know the routine the next time one went back and what was going to happen. And then after a while it just becomes a pattern, it’s very reassuring.

It does get easier with time.

Yeah, yeah you know I mean you know to book the first appointment and it’s not going to, you’re not going to see anybody for a good, an hour so bring a book and play and get all the testing done first so that you can be the first one through.

Other peoples questions when they just want to know from an information point of view and you think you understand then actually they’re quite helpful to be having those questions because it hones your own understanding. When, as we experienced, my son’s great uncle also is bradycardia and his consultant has never implanted a pacemaker in him and strongly feels that a certain type of bradycardia should not be operated on. And as one of the country’s leading exponents, or one of the first pacemaker implanters his knowledge base had been very important. That added a huge pressure because we were then being persuaded by members, senior members of the family, that it was incorrect to have the pacemaker and because we only had a 48-hour period in which to prepare for the operation, that, that strain was horrendous.

And I’d say there you need to try to speak to the relevant consultants as fast as possible. And by that I mean if there is a close family member who is trying to contradict the advice that you’ve been given then get to speak to their consultant as fast as possible. And in our case they couldn’t have been more helpful. As it happened his consultant knew about my son’s case because the medical world is quite a small world and so our consultants emailed the files over. There was a discussion I was able to telephone, I was able to hear exactly what their opinion was and in fact the current consultant, the great uncles current consultant felt that the operation was imperative. And I therefore was able to say to him ‘Please could you inform your patient why you say that? And as fast as possible because the stress that were experiencing is huge.

At a very stressful time?

A very stressful time anyway. So to have contradictory advice coming through is very hard.