Talking Sense - Volume 45, Nos 3+4, Autumn/Winter 1999
When parents Hannah Levey and Sue Turner met recently they found that they had a lot of experiences in common. Hannah’s son Joshua (6) has CHARGE, and Sue has two sons with disabilities who have now grown up and left home. They also discovered that support for young parents with a disabled child does seem to have improved since Sue was a young mum - although there is still a long way to go.
Sue: How did you find out about Joshua’s difficulties?
Hannah: Well, as soon as Joshua was born it was clear that he had all sorts of problems. He couldn’t feed properly and we found out that this was because his oesophagus was not joined to his stomach. He went into a children’s hospital and stayed there for about five months – we virtually lived there. For his first operation his oesophagus was joined to his stomach, and then the surgeon found out that he had problems with his heart too. We could also see he had funny ears and didn’t seem to respond to noise. And so gradually we put things together. He had vision tests, hearing tests and they found out that his nose was blocked. When he was about five and a half weeks old he was finally diagnosed with CHARGE.
Sue: Was it helpful to have a name to put to the problem?
Hannah: At first I thought, so what? At that time it didn’t make any difference to us: he was still deaf, he was still blind, he still had feeding problems, he was still lying flat on his back and not responding. It didn’t feel like having a label was going to make any difference.
Sue: That’s interesting because my experience, with my son Ben, was very different. Ben was my second child and he was born at home. He was born very quickly so there was only my husband there. He had very bad nystagmus when he was born, and had very poor muscle tone – that soft floppy feeling. But he wasn’t diagnosed as being deaf and having a learning difficulty until he was three. I went to the local hospital and said that I just couldn’t cope any more – I needed to know what was wrong with Ben. I had three children under three by then and I was just totally exhausted trying to cope. And so finally, they sent me up to Guys where they did the tests and found that he was profoundly deaf.
I also had a difficult experience with my fourth son, Luke, who has more physical disabilities than Ben. For the first year of his life I was told there was nothing wrong with him, and it was just that I was a neurotic mother. I actually saw a letter that the hospital wrote which said, ‘Don’t send back this neurotic woman’. During that time I was so worried I though he might die because I knew that things were wrong. Luke is deafblind, has epilepsy and spastic quadraplegia – how could a doctor miss that?
From what you say – that you were given a diagnosis fairly quickly and told what was physically wrong – it does seem to show that things have moved forward.
Hannah: Yes, but there is still a lot of awareness raising to be done. I still have to explain to junior doctors what CHARGE means and I get so fed up with that.
Sue: It’s not very reassuring is it?
Hannah: No - although I must say that the care Joshua received at the hospital was very good and his consultant got to know him very well. If things weren’t going well I could just pick up the phone and call the hospital. One of Joshua’s doctors from when he was young is still one of his doctors now. So they’ve got to know us so well, and they’ve trusted us.
Sue: That’s very good to hear – that’s how I thought things should have been for me. But the early days are terribly hard aren’t they?
Hannah: Well, I used to work with children with disabilities as an occupational therapist. And I used to think, I can work with children like this but I don’t think I could cope as a parent. But when I was pregnant I had such a powerful bond with the baby inside me, although I also had a feeling that something was not right.
The hardest thing for me when Joshua was born was seeing him in pain. I shiver just thinking of that. He had such a sad unhappy look on his face, that seemed worse than all of his physical problems put together. When I saw his sad little face, I couldn’t care less about his physical problems, I just wanted him to be happy. We found it really difficult to deal with.
Sue: I think maybe my situation was a little different, because I already had a child when Ben was born. We were already a happy little family and then when Ben was born we were thrown into a whirlwind. I felt so resentful sometimes that this child had come in and broken up our nice family. It was very difficult to come to terms with that. It wasn’t until he was about five years old that I saw what good qualities he had. It was like a revelation to me – this kid has got a really good sense of humour. But I feel that if I’d had help at the beginning I could have got to that stage so much quicker.
Ben was unhappy but he didn’t know why. He needed constant attention and didn’t sleep day or night, and I felt so much confusion because I didn’t feel I was coping, I didn’t know what was happening. But I didn’t feel I could tell anyone else. I felt we had to go out and pretend that we were a happy jolly family and that nothing was the matter. So it sounds like perhaps you coped with it better…
Hannah: It did help me that I had worked with children with disabilities, but perhaps it was the path I was destined to. I had a realisation one day about Joshua. I was finding it really hard to cope, but one day I was feeling a bit better in myself - I think I had had a massage. But that day I noticed a big difference in Joshua as well. And straightaway I realised that I had to pick myself up and look after myself for his sake. And since then we’ve always tried to be positive towards him.
Read part two of the interview here.
