What They Say and What They Mean

Rowan Maulder, father of a heart child & Executive Committee member of the Wessex Children’s Heart Circle

Thank you. I'd like you all to stand up for a minute and just shake about for a bit. If your bum feels anything like mine does, you'll need to. I've got a bit of technical stuff to do, so I'd like everyone to say a short prayer and pay homage to the gods of all things electronic. Obviously, you can sit down whenever you want! I just thought you might fancy a little break.

Thank you all for listening to me. I don't suppose you had much choice. We've got about 20 minutes before lunch and I think I can get through it in that. The quality of the speakers so far has been fantastic. I just hope I can come somewhere close. I guess our story is much like anybody else's. We've all been through things we don't want to go through again. I wanted to just do something that was a little bit different. I'm sure along the way you've all had experiences with various professionals, and I thank God for these people, don't get me wrong, but we've had some funny things happen, and I just thought we'd share them with you.

(Picture of Janet maulder heavily pregnant on the bed Caption: before the storm)

My wife is not going to thank me for this picture! It was all going very well, and this picture was taken shortly before the best day of my life. We went down to the hospital and at about 3.30 our little girl was born. We took everything with us. We were prepared. We had tapes, we had whale song, we had food, crisps, and sandwiches. I couldn't wait for the helium or whatever it is – nitrous oxide, that's right. I thought, "yeah, I'll have some of that". The actual birth was fantastic and I think, on the day, instead of listening to whale music my wife actually insisted on listening to the football and just as Ellen was born, England beat Scotland in the European Cup. So it was rather a momentous day.

I went home in true fatherly fashion and did what all fathers do and got absolutely hammered and thought "Isn't life great!" and went to bed. Unbeknownst to me, my wife Janet had woken up at about 5 o'clock and things had started to go wrong. I got a phone call at about 7 o'clock and I went racing to the hospital and by this stage Jan was rather frantic, to say the least. It was when it was all explained to us that Ellen had a possible heart problem, although they didn't know because the scanner wasn't quite up to it and they'd have a look in to it for us. But I guess I really knew things were going wrong when I was asked this question, "Would you like your daughter baptised?" In a way I was relieved and yes, we said yes we wanted her baptised, and this happened before she was moved to Southampton General. I think the move to Southampton from Poole was the risky bit. So the baptism took place in the Special Care Baby Unit at Poole. Ellen was in an incubator. I am now converted to Church of England, so I was shocked – we had a female chaplain. It was lovely – well, as lovely as it can be, I guess – and I'm glad that it happened. That baptism was really our baptism of fire. We were coming in to a whole new world. A world of people speaking strange languages, abbreviations, that's the one that gets me. But I notice I do it myself now, although I do try not to. It's knowing the language, isn't it?

We then spent ten days at Southampton. Ellen had her first operation and she recovered well. During that time everybody at Southampton was fantastic and I'm sure everybody here would echo that. The staff was fantastic, and we had an amazing period really, as upsetting as it was. We were very well looked after, and we made some very good friends. However, it is a bit funny looking back now, at some of the things that were said. We managed to keep ourselves together for the most part, but there was one particular occasion that sticks in our minds. This is the one we like to tell at parties. It was when Janet was sitting by Ellen's bed and she heard some doctors talking about her. Their exact words were, "Has she got a liver?" "Nope!" Of course, when I came back, Jan was in tears, going, "What's going on? She hasn't got a liver! She hasn't got a liver!" I said, "Come on, don't be ridiculous, she must have!" It took me about ten minutes to convince her with my limited medical knowledge that if she didn't have a liver then she wouldn't be alive. Of course, for those of you who don't know, although you're probably all aware of this by now, having a swollen liver is an indication of possible heart failure coming on. So the doctors were actually checking to see if the liver was swollen. But that was the start of it.

This next quote is from a very well known medical professional from Southampton who has since left. "Bring her back when she's a bit older and I'll fix her properly". He was on his way up the corridor in a rush as usual. I guess it was funny because, to us, all we could think of was an old banger, a rusty old car. And it is funny, looking back. I suppose at the time we had mixed feelings, but it was funny.

The difficult thing, I think, is that the people dealing with us don't always have the language and the words to use that we feel comfortable with. Everybody is different, everybody has different views. I started getting really upset about some words, thinking why do people use that particular word, I don't want my child described like that. But again, everybody has their own words that they are comfortable with or not comfortable with. One of the ones that comes to mind is when we first got back home, and we had the paediatric community nurse come visit. I just said to her, what's the difference between the health visitor and you, why are we getting this now? And she said that she was for the sick children, and the health visitor was for the normal ones. Well, you could have cut the air with a knife, or should I say scalpel. But of course, our relationship with that particular person actually developed well. It was a valuable relationship and she was a real ally. The only shame about it was that the first thing that came out of her mouth did so much damage to our new relationship. It could have effected the health of my daughter. As it was, she was actually the one who spotted things and got things done when we had a scare a year later. But it was quite worrying at that time.

I have another pet hate. I am not trying to be damning about the medical profession, because as I say, I love them all dearly, but this is my favourite:

"So, what's going on then?"

Which to me means, "I haven't read you child's notes"

I don't expect any doctor to have read all of the notes, but if there are any medical people in today, I would just say, that it is important to parents that you have some understanding of their child's condition, or at least know what sex they are! Yeah? A bit flippant, but I'm sure all of us have experienced it at one time or another. The good people are the ones we don't notice, and they are the ones who know your child's name, who do know what's going on, and who reassure you because of that. And those are the people we are probably all really thankful that Southampton has so many of.

(Slide Caption: Ask questions if you don't understand. Make it your business to understand)

I don't want to be negative, and I hope you are finding this a positive experience. The message is that as parents, you have to find out what is going on with your child. Some of these things were taken from situations that are a bit comical, but take the time to ask the medical profession to make things clear. I've heard it said so many times today: take the doctors to task. If you don't understand, get them to tell you in plainer English, and to draw diagrams. They will do it for you. You are not only helping yourself by having a better understanding, and maybe losing some of your phobias and fears, but you are also going to help your child, as you can explain things better, and you're not going to be in the way panicking when things go wrong: you'll have some idea of what to expect.

Unfortunately, as parents, I guess the onus is on us. But maybe that's not such a bad thing.

(Picture of Ellen about 2 years old shouting and smiling)

This is Ellen today, creating a lot of noise, as usual. It is a happy story for us, and I know it is not always a happy story for everybody. But if we're all there for each other with help and support, we can all get there. The only other thing I worry about is what next, and where do we go from here. And that is really up to her, and just as well, I suppose.

(Picture of Ellen in a t–shirt on Bournemouth beach with a bare bum walking into the waves. Caption: After the storm) She's doing great, she's playing next door. This is her during her first time on the beach when she got out of hospital last time. There was a point somebody made about not wrapping these babies up in cotton wool. We've certainly tried hard not to do that, to the point that our friends think that we're hard on her. But I don't think it's a bad thing. I think if you meet her, she has got a lovely personality. That's a dad talking, I'm sorry! Listening to a few things you were saying about how their personalities are changing because they are meeting so many people, I thought, "yes, of course!" Because she's never had a problem with other people, so I guess we were lucky in that sense.

We've all faced a storm, and we've all got a long way to go. I hope it all goes very well for everybody here, whatever is happening in your lives.

Thank you. [Applause]

Any questions or comments?

Comment: It's not a question...When Victoria was two she began to walk, and I was really chuffed, and I went to see a certain doctor. I said, "She's walking!" and he went, "Oh, it won't last."

Q I was just going to say that I think one of the main things we've picked up from going to our local hospital a lot is that you speak to many different levels of doctors, and I don't think you should ever be afraid of thinking that they know what your child has got and sitting there just explaining what they've got instead of assuming that they do know, because I think many times we've been caught out speaking to the junior levels of doctors and we suddenly realise when they've gone away that they don't actually have a clue what your child has got or anything else. You should not be afraid to speak to the medical profession.

A; Yes, that's a really good point. We actually started to get afraid by the fact that they didn't know as much as we knew half the time, and that's scary! And that's why if you don't know, how on earth are you going to ensure that your child gets the best care? That's why it is important to know, and find out all you can. The level of doctor also makes a difference. We had a comical episode at a hospital up north when we were on holiday. We took Ellen in and there was a huge queue in A&E, so we managed to jump the queue by staying, "look, she's got a heart problem," she was having tremors and was shaking and everything. Of course, like all children, she got in there and was totally fine almost immediately! We told the guy that she'd had surgery when she was four days old on her heart, and he said "right" and wrote it down, and then a few minutes later after he had had gone off, somebody else came rushing in and said, "Where's this child who had heart surgery four days ago?"

Q: I'd just like to make a little comment here. I might be giving some advice that everybody's already got, but it ties up with a lot of ideas that have been running right through the morning, about communication. In times of stress it is very difficult to keep logical as a parent and keep cool. And it is your responsibility to your child to do that. So, to ensure that, we've done a prÚcis, that is always available, which is the history, and briefly and accurately as possible, of our child. I cannot over emphasis how important it is to do this. So that wherever you are in the country (because it is not fair to expect yourself to be able to calming go through it and give the information the doctor needs), you can just hand them this and say, "Read this!" you are doing yourself and your child a big favour. Communication has to be efficient and accurate, and at 3 o'clock in the morning when your child is spiking a fever and you're dealing with a stranger, it is not a good time. So have this, make sure you've got it, spend some time and make sure it is accurate and up–to–date.

A; Yes, that's a good idea. We're going on holiday next week. We're taking Ellen to New Zealand for the first time, and we're actually taking a letter from one of the doctors up on E1 with us, which gives a brief history. The hospital has now started doing travel notes, which are useful.

Q: Just following on from that, some hospitals, like Birmingham, do provide parents with little red folders which have got almost clinical notes in detailing every procedure the child has gone through and they are extremely useful. Not only for you to read through, but for the child to read through too. Children can take them on school trips and they detail who to phone and where to phone if something happens. So all lines of communication are open. It is a calm way of doing things. So if your kids haven't got little red folders, maybe encourage them!