Clare X
Clare’s daughter, Eliza was diagnosed with 4q Deletion Syndrome. She has several chronic heart conditions, including bicuspid valve and aortic stenosis. She was also born with a cleft palate, and she was diagnosed with Asperger’s Syndrome. Eliza’s health has improved significantly since she had her first major heart surgery at the age of 4.
Clare works as a part-time teacher. She is married and has two children. Her daughter is 11 and her son is 9. Clare and her family are part of Unique, a charity for families with children who have a genetic condition. Ethnicity: White British.
More about me...
Clare’s daughter, Eliza is 11 years old. She was born with 4q Deletion Syndrome, which is a genetic condition that has affected her health. She was diagnosed with chronic heart conditions, such as aortic stenosis, bicuspid valve. She had her first major heart surgery at the age of 4, and she is expected to have more surgeries as she gets older. Eliza was also born with glue ear and cleft palate, which has been repaired. She was further diagnosed with Asperger’s Syndrome. However, she goes to a “normal school”, and Clare feels she is going extremely well there. Eliza sees a heart specialist for her aortic stenosis, and she goes to a speech therapist. She also sees a genetics consultant every once in a while.
When Eliza was 4 or younger, she used to get ill with the flu, which would often develop into a chest infection, causing her major respiratory problems. She often had to be hospitalised and tested for lung infections. On several occasions, she had to go to intensive care for breathing problems. Once, Eliza had a respiratory arrest when she was ill with the flu, and Clare had to resuscitate Eliza while they were waiting for the ambulance.
Because Eliza was so prone to developing respiratory complications from the flu, the hospital provided Clare and her family the possibility of direct admission, so they wouldn’t have to go through a GP when Eliza was sick. Clare found the hospital care excellent. She feels that the hospital became a “substitute community”, which was a “safer place than home”. Clare and her family received much support from friends and family, but she feels that being in a hospital is ultimately an isolating experience because the number of people who can visit is limited. Therefore, they were mostly reliant on the support of doctors and nurses.
For this reason, Clare is particularly appreciative of all the healthcare professionals who were involved in her daughter’s care. She feels that they always listened, and they never dismissed her concerns. She thinks that parents are usually the first to notice if their child feels unwell, and she feels that doctors know that too, which is why they always made an effort to involve her in Eliza’s care. However, during their consultations, the flu was never their main concern because Clare feels it was a by-product of Eliza’s more serious underlying conditions. The doctors would usually prescribe Eliza antibiotics to treat her chest infection. Clare feels that they always explained why they thought antibiotics were the best option. For Clare, antibiotics should only be used in the most severe circumstances. She is concerned about resistance because Eliza will continue having major surgeries throughout her life so she will be reliant on antibiotics treatment.
Eliza had her first heart surgery at the age of 4, and her health has improved significantly since. Whenever she becomes ill with cold-like symptoms, she recovers within days. She still gets earaches sometimes, for which she takes antibiotic ear drops. She also gets the flu jab each year, which Clare feels also helped Eliza becoming less sick with serious flu-like illnesses.
Clare’s message to other parents in similar situations is “trust you instinct” and “make a fuss if you need to”. She finds that healthcare professionals are incredibly busy, which is why sometimes parents need to be insistent. Similarly, she would like to thank the health professionals she has encountered so far for listening despite being under serious time-constraint and pressure.
Clare appreciates that the doctors on the children’s ward listen to the parents She was never made to feel she was “just an anxious mother.”
Clare appreciates that the doctors on the children’s ward listen to the parents She was never made to feel she was “just an anxious mother.”
And it was really useful for us that they gave us that open access to the wards. That really helped, so. No, I think we were treated really well.
Do they ask you how you feel, or your opinions around certain things?
Mmm. I think because the nature of her condition is, is quite unique, we often know more about her history, about the global picture, than the people we're speaking to. And they're more than happy to acknowledge that. And I think that's one of the things I have appreciated the most, is that they do really listen to us as parents as well. And I've noticed sometimes I've taken her to hospital with just a hunch that something's not right, and I've never been dismissed for that. And normally I'm right about it as well. And I think I've always really appreciated the fact that the doctors have never said "Oh, it's just an anxious mother." You know, they've always really listened. And have acted. And I think a couple of times that's been really important for Eliza, that that's happened quickly. And I think sometimes parents are the people who spot things very quickly. And I think, I get the impression that the doctors know that, actually, I think. A nurse told me once that if - it's perhaps a slightly sexist thing to say [laughing]. But if you want to know if a child's really ill, have a look and see how much the mother is panicking. And I thought that was quite an interesting comment, because it shows a sort of attitude of taking, taking the parents' views really seriously.
Clare worries about moving into a post-antibiotic era if new drugs are not found.
Clare worries about moving into a post-antibiotic era if new drugs are not found.
Is antibiotic resistance something that you think about, or?
Yeah. I do. I do. I heard the news the other day about in China where they've discovered something which doesn't seem to be responding at all to any kind of antibiotic. And I, yes - I had a moment where I thought that's bad news. And when they say we're moving into a post-antibiotic era, that did worry me, because antibiotics have sometimes been the only thing that have worked for Eliza, so. And given also that she's somebody who's going to be having major surgery regularly through her life, and those post-surgery infections and so on that she's been treated for so many times, you know, if there aren't antibiotics I don't quite know what the alternative is. There doesn't seem to be anything at the moment that's in the pipeline, so. Does concern me a lot, yeah.
Eliza tolerated amoxicillan well but she had side effects with other antibiotics. Probiotics prescribed by a dietician improved her health.
Eliza tolerated amoxicillan well but she had side effects with other antibiotics. Probiotics prescribed by a dietician improved her health.
Any side effects of the antibiotics?
Bit of an upset tummy. But some were better than others. As I say, the one that we ended up with, which I think was amoxicillin, she was okay with that. Other ones made her quite unwell, but that one seemed to be okay.
When she was taking a lot of antibiotics we were prescribed by a dietician some probiotics, which made a massive difference to her health. And also, I don't know if it was coincidence or not, but it seemed to stop the, the constant vomiting that she had as well. And I do wonder if there was a link between her vomiting an awful lot and the fact that she took a lot of antibiotics. So we were well aware of the fact that they were doing very vital work, but also not so good for her general health. And our hearts always used to sink a little bit when we knew she'd have to go on a course of antibiotics, because it just, you could see, it was not great for her. But she needed it.
You said that the probiotics were a massive help. In which way?
She just stopped being sick. We didn't start taking them until she was about 12 months old, I think. And she'd been, just been sick every day. As if she had food poisoning or something. Since she was born, more or less. And as soon as she started taking the probiotics, that really calmed down. So, but it may have been coincidence, because it took her a long time to learn to sit up, as well. And it could all have just been connected with the fact that she had very low muscle tone, and those kinds of things as well.
And how were you giving the probiotics?
We would, we had capsules. So we'd break them apart and sprinkle them in yoghurt, and just feed them to her on a spoon.
Okay. Do you still use them?
No.
Clare is reassured that Eliza has an annual flu vaccine as it seems to prevent her getting flu-like illness. She says the nasal spray is ‘brilliant’.
Clare is reassured that Eliza has an annual flu vaccine as it seems to prevent her getting flu-like illness. She says the nasal spray is ‘brilliant’.
So what are your views on the flu jab?
I think it's brilliant, yeah. Yeah.
Okay.
For someone like her it's brilliant, yeah.
Any - the pros and cons?
There aren't really any cons. The only thing I'd say is last year apparently the flu jab [laughing] wasn't a particularly effective one. But she was fine anyway. But yeah, I find it incredibly reassuring, and will always go and get her a flu jab. It was brilliant when they changed it from a jab to a spray. That was really good. Because she was beginning to get quite fed up with being jabbed with needles. So that made it a lot easier. Yeah.
Okay. So how serious do you consider flu-like illness to be?
For Eliza? If she got flu, I would be worried. Just because she can go downhill very quickly with, you know, anything really. But she just doesn't seem to get it. And I guess that's the flu jab that's doing that.
That it's helping?
Yeah.
Eliza had complications from flu-like illness frequently when she was younger, so her parents “lived in the moment.”
Eliza had complications from flu-like illness frequently when she was younger, so her parents “lived in the moment.”
How did you manage when sort of she had to stay in hospital for several weeks?
Oh [laugh]. Oh, it was really hard. We, we were lucky because we had one child. I mean, I don't know quite how we'd manage it with both of them. But , we were able to take it in turns to stay with her. I was on maternity leave, which I had to - I didn't go back to work for another three years. Which was not part of the plan, but [laugh] that's obviously what had to happen. And it was, it was incredibly hard. You know, we were very - incredibly sleep-deprived for a year and a half. We didn't sleep, really. So I think we just hunkered down and just took it a day at a time. And just - I don't know. We didn't make any plans, we just - we literally lived in the moment. And whilst it was going okay for that moment, that was alright. [laugh] And then if something occurred, we'd just deal, you know. It was just literally moment by moment, dealing with it. That's the only way you can really, because otherwise everything is just, you know, everything just becomes too much. So that's how we did it.
Clare says to trust your instinct about how ill your child is and be insistent to make sure your child is not overlooked by health professionals.
Clare says to trust your instinct about how ill your child is and be insistent to make sure your child is not overlooked by health professionals.
So, I don't think I've got anything to say specifically about how you manage your own child's illness. I think you, you have to be advised by your own instincts, and the, the knowledge of the people around you. But I would say definitely trust your instincts. And make a fuss if you need to. I think, I'm not the sort of person who's particularly happy with making a big fuss about things, but I will for my children. And on occasion that has been something really important that I've had to do for them. So definitely trust your instincts.
And when you say a fuss, was regarding Eliza?
Just, doctors and nurses are incredibly busy and very pressured people. And I would never be rude, but I would be insistent. And I would say "No, I really do think she needs to be looked at." And just make sure I stuck to my guns. As I say, not in a rude way. I don't think that's - you don't need to be rude. But, just given how much pressure people are under in the hospital situation, just making sure that you're not overlooked, and making sure you stick to your guns with things, and insisting on a few things [laughing]. I've done that on a couple of occasions.