0:09
Hello, I'm Doctor Megan Hoffman and I'm Doctor Vicky Queralt.

0:15
We're clinical psychologists specialising in child health care, and we're also mums.

0:21
From our work in hospitals to our chats on the playground, we've encountered countless examples of strength and courage from families facing health issues around their children.

0:32
Whether it's going for a blood test or managing a chronic health condition, we hear about the challenges and obstacles, and we see the parents and caregivers trying to overcome them.

0:43
In this podcast, we want to shine a light on these families and delve into their healthcare stories to discover what's worked for them and what might be helpful for you too.

0:55
Hi, and welcome to episode 7 of Little Journey Spotlight Sessions.

1:01
Today we're going to be joined by an amazing mum of four, Caroline.

1:05
Caroline's son Harry was born with hydrocephalus and lives with a permanent shunt which drains fluid from his brain.

1:13
In our session today, Caroline talks about her experiences of visiting hospital with Harry and she also talks to us about an amazing charity, Harry's Hat, which she founded with her husband and which supports countless children and families living with hydrocephalus.

1:29
We're really looking forward to sharing her experiences and insights with you.

1:33
Hi Caroline, welcome to the hospital live session.

1:36
Hi Caroline, welcome.

1:38
So we wanted to just start off by asking you a little bit about your family please, and also about Harry's condition.

1:46
Sure.

1:47
Well, I'm Caroline and I'm a mum of four.

1:50
I'm married to Matt and we have Harry who has hydrocephalus, which is effectively, well there used to be known as water on the brain.

2:00
And when did you learn about Harry's condition?

2:03
So Harry was diagnosed, well his was quite a strange route to diagnosis in that I had a very random scan at when I was 36 weeks pregnant.

2:15
So at 20 weeks the baby was absolutely fine.

2:19
He just had the baby.

2:21
We didn't know if it's boy or girl then had a big head but was within the normal parameters and at 36 weeks they scanned him and they actually said there was a loss of brain component and he was probably incompatible with life.

2:36
We were referred to a specialist hospital where they found that actually he wasn't, he had a very large arachnoid cyst and that he would be born at a specialist hospital and would very lightly need a surgery on the day of delivery.

2:54
But actually he came out pink and screaming did relatively well quite quickly, but they were measuring his head circumference very quickly.

3:03
They realised that his head was growing, so he did have hydrocephalus and would need a shunt to effectively save his life.

3:10
So he was shunted at 8 weeks old.

3:13
Wow.

3:14
And I'm right in thinking that they that that's a permanent shunt, that that is something that he still lives with today.

3:20
Yeah, shunts are permanent.

3:22
So hydrocephalus is a usually a lifelong condition and there is no cure effectively, but there is good treatment and the shunt is inserted into his brain and drains the fluid effectively of the CSF fluid and, and keeps him here with us.

3:44
And can you tell us a bit about what life is like for Harry now?

3:47
He's a, he's a six year old boy at school and how does he cope with things?

3:54
He has a really good quality of life.

3:56
I mean, he was diagnosed very early, so he was shunted early.

4:01
And we truly believe that the earlier a child is diagnosed and treated the OR managed effectively, the the better their outcome.

4:09
And he's he's testament to that.

4:11
So he is at mainstream school, he plays football, he does pretty much most things that a inverted commas normal child would do, albeit he's had a numerous brain surgeries and we live with that kind of sort of uncertainty that the shunt could block at any time.

4:33
So they can put the shunt in and in some children they will have their shunt and it will never block.

4:39
And they'll, you know, we, we know of people who are 4550 with shunts and that was the first shunt that was ever put in.

4:45
And then we know of sort of, you know, 10 year old children who've had 36 shunt revisions in the fan of shunt revision again, is surgery every time.

4:54
So there's no way of really knowing how the how the child is going to do.

4:59
Caroline, how, how do you know, how would you know if a shunt needs changing or the surgery needs?

5:05
How does that?

5:06
Well, this is the the tricky thing with a child.

5:09
The the signs of shunt brokerage are vomiting, quite excessive vomiting usually, although Harry doesn't tend to follow that.

5:18
Lethargy, tiredness, just not being quite right.

5:22
Obviously some of the more acute signs, they call it sunsetting eyes when the eyes are are looking downwards that would, you know, indicate that the child needs very, very urgent medical help.

5:33
But for a lot of for Harry, it's often he's just not quite right.

5:39
So it's getting to know your own child and what their symptoms are and, and it varies.

5:45
And obviously, you know, I'm a mum of four children.

5:48
We have a very busy household.

5:50
We have lots of children in and out house, you know, they get childhood illnesses and bugs.

5:55
And you know, I'd love to have a day in our house when there isn't some sort of bug going round all the, you know, vomiting bugs and all those.

6:03
And it's quite easy to think it's a Trump blockage.

6:05
And it turns out that actually he's just got the virus that's going around the school.

6:09
But equally you always worry about missing it.

6:12
How how is he understanding his condition?

6:15
And he's got more aware of it.

6:18
The certainly, yes, he's 10-6.

6:22
He's much more aware that he doesn't like it as much in terms of he's very aware that he needs to go to hospital quite a bit and he associates hospital.

6:34
He loves his neuro surgeon, he loves the neuro nurses very much and he sees them as his people and he feels very comfortable around them.

6:46
But he doesn't like hospitals because he associates that with being in pain, having invasive procedures.

6:53
Everybody been stressed that that sort of thing.

6:56
He he's, he's and the older he's getting, the more he's becoming quite aware that he's got hydrocaphalus and his friends don't and that that doesn't feel very fair to him.

7:06
I suppose just before we ask you about your healthcare experiences of taking him to hospital, I was just curious to know what is it?

7:14
I'm really pleased to hear he loves his virgin and the nurses.

7:17
What is it about it that's helped build that relationship?

7:20
Like what?

7:20
What's he love about them?

7:22
He's they.

7:23
They talk to him as Harry.

7:24
They take the time to know him as as an individual.

7:29
He likes the fact they make a bit of a fuss of him.

7:33
He know, he knows them by their first names and I think that's quite important.

7:39
And we talk to them.

7:40
We, we have quite an informal relationship with them.

7:44
So we're quite comfortable around them.

7:46
And I think that comes down to Harry feels quite, we'll have a laugh and a joke with them and they've got nurses, a family.

7:53
You mentioned that he's had to have quite a few invasive healthcare procedures.

7:56
Can you, is this one of them or you can talk to us a bit about?

8:01
Yeah, I mean, obviously he's had what they call shunt revisions, which is when the shunt blocks.

8:06
He's had an infection in the one of the shunt sites quite a few times when a certainly at district General Hospital level, they think it might be a problem with the shunt.

8:18
So they'll go in and with quite invasive, you know, IV lines and things like that, which he absolutely hates.

8:27
There's usually a discussion if we go to our local hospital about whether or not we should have ACT scan.

8:32
And obviously as his parents we would rather he had an MRI scan at the specialist hospital because there's less risk of radiation.

8:40
So he doesn't like the scans because they're loud and the, you know, CT scan is very, very noisy where so fast MRI is quite quick.

8:49
So obviously he would prefer that as well.

8:52
And there's often lots of discussion around him.

8:56
He's in the middle and it's, you know, all the adults are talking over him about what best to do and that sort of thing.

9:02
He just doesn't like the general environment.

9:05
And given he hates it so much, how would you get him to hospital?

9:08
How do you get him to have all these?

9:10
Well, if, if there is no option, if there is a child, if he's seriously ill, he, he is not in a state where there's much, you know, resistance because he's that poorly.

9:25
And a lot of the time when he's not, when it's routine, it's about persuading him this is this is in his best interest, but he doesn't like it.

9:33
And as parents, we don't like doing it because we don't like doing something to a child that he doesn't enjoy doing.

9:39
Your natural instinct is to protect them from something that's going to upset them.

9:43
But equally, we know it's for the greater good.

9:45
So we use a lot of bribery.

9:49
McDonald's is great.

9:50
You know, he he's keeping out the order he gets, the more treats he gets.

9:55
And he's, you know, he wanted an England kit last time.

9:58
So, you know, he's not done.

10:01
It's really.

10:02
Yeah.

10:02
Rewards are brilliant, aren't they?

10:04
Is there anything else that you find that you do to help him?

10:07
We talked to him, we're honest with him.

10:11
He will say to me, this is not going to hurt me, is it?

10:16
And if I think they're going to have to put a line in him or do something, I won't promise him that it won't because that's not fair on him that he started to say you won't let them hurt me.

10:28
This won't happen.

10:30
And that's his way of sort of trying to protect himself, I think.

10:33
And I think as his parents, we just have to be really open and honest.

10:37
But we say that, you know, nothing will happen without you being told about it.

10:41
And then we talk about the things he might like to do afterwards.

10:44
And she's usually pretty persuasive about what he'll what he'll get as a result of going there.

10:48
So, yeah, take them to hospital was quite expensive.

10:51
It's such a powerful tool, though, isn't it?

10:54
Just kind of giving them that positive thing that's going to happen after the horrible thing.

10:59
I want to talk to you about your amazing charity that you founded.

11:03
Can you talk to us a little bit about what gave you the kind of motivation to set that up and just talk to us a little bit about the amazing work that you do?

11:12
Yeah, I mean it, it's all sort of grown quite holistically really.

11:17
I've worked in fundraising all my adult life and worked for some quite well known organisations and done other sort of campaign and policy work.

11:28
So the nurses on Harry's Woodbury were aware of the kind of work that I've been involved with and we were sort of talking to them about some of the things that we found as parents when we were there.

11:44
I found the evenings very, very difficult on my own with him and, and those sorts of things.

11:50
So originally we were going to going to try and fundraise for a little bit of better stuff on the ward effectively.

11:59
But talking to the nurses, one of the things we found is that if they wanted to do training around hydrocephalus, which is obviously a fashion, some of them were sort of looking to fund it themselves.

12:12
They were struggling to get leave and where the hospitals could fund it.

12:18
The decision making process was quite long.

12:20
So we thought we'll we'll set up a fund that's independent.

12:24
So if if nurses want to, you know, train more in the subject and therefore be better able to treat children like Harry.

12:31
I mean, we did it for selfish reasons.

12:33
We didn't do it, you know, because we were great people, you know, there was a lot of self-interest in it.

12:39
We thought we'd have this fund that we could easily, you know, support them and, and support them across the country.

12:47
The, the original plan was to raise £20,000 and then have done with it really.

12:52
But as soon as we set up the sort of social media handles and stuff, more and more families are getting in touch to say how isolated they were feeling themselves.

13:03
And to to us, hydrocephalus is a stand alone condition.

13:08
So the more people that were contacting us, the more, you know, evidence there was that actually families were just like us.

13:15
We're feeling quite isolated.

13:17
And then like when Harry was diagnosed, I didn't really definitely didn't want to talk to lots about the medics, didn't want to talk to other professionals and wanted to talk to another mum who would level with me and tell me what my life was going to be like.

13:31
And in fact, one of the mums on the ward, one of our trustees was one of the first people I, I came into contact with.

13:39
And she's still my go to mum.

13:42
And I think we all have those, those relationships.

13:46
But it's isolated.

13:47
There is no like idiot's Guide to Hydrocephalus, which we kind of wrote after that, but there there isn't.

13:54
And it's, it was really isolating when Harry was diagnosed.

13:59
It was pretty much here's some bits of paper that you can have a look at and you know, don't Google it, which of course I did.

14:08
Of course, you know, it didn't feel, I think as well we did, we came out with a few bits of A4 printed paper, but it didn't feel anywhere near relevant to the to the size of the life changing diagnosis and that that he had.

14:27
So yeah, it's sort of proved very holistically just from people telling us what the need is.

14:33
And so, so I'm really getting that sense of like how how isolating it was 1 still is, but how important that connection with with other parents and carers.

14:42
Yeah, absolutely.

14:44
It's the our peer-to-peer work has really taken off.

14:47
I think we've got about 870 families now registered and more counting and then the work has grown.

14:54
So we found lots of families were coming saying that they opportunities to measure their child's head.

14:58
They didn't realise why head circumference measurement is so relevant in terms of a hydrocephalus diagnosis.

15:04
And actually in the UK, we only routinely measure babies at birth and then six to eight week check.

15:11
Whereas if you look at countries like Finland, Norway, it's 10:00 and 11:00 in the first year of life.

15:15
So which babies do you think gets picked up earlier?

15:18
You know, we're, we're way behind.

15:21
So we we launched the Get Ahead campaign, which is to to make families aware of why head circumference measurement is so important and to educate frontline healthcare professionals.

15:34
We've set up a petition and just looked at it.

15:37
We've got 22,000 signatures on it and now every paediatric neurosurgical unit in the country have signed as well and we just want their current guidelines reviewed.

15:51
We're not medically qualified, so we can't say whether they're right or wrong so that we can say empirically.

15:58
This is what we're seeing.

15:59
Lots of families are coming through where their child wasn't diagnosed a lot later and they didn't have their head circumference measured, or if they did, they had it measured at birth and then not again.

16:08
So you couldn't spot a trend.

16:10
And I mean, I'm a mum of four.

16:12
I used to, you know, part of my day job used to be working for women's refugees where we had a lot of, you know, staff come in and out to, to support the women.

16:22
I had no idea why you measured ahead.

16:24
I just thought it was a nice to do.

16:25
I didn't realise what the significance was.

16:27
We're hoping the new health secretary might listen to us and, and, and commissioner review just to make sure that what we're offering here in the UK is, is good enough.

16:39
Sounds like you're doing such important work and wish you all the best with that campaign because, yeah, I wouldn't be behind you.

16:48
I wanted to ask you, you, you touched on there about how you found that person on the ward who could tell you what life with hydrocephalus is going to be like.

16:59
I wondered if you could talk to us a little bit about that.

17:02
How does Harry's condition impact your whole family and and you as his parents?

17:08
I think it impacts us all differently.

17:10
I mean, one of the the things that the sort of hidden side of it is for our other children and they have.

17:18
I'm really coming up to the end of term today.

17:21
As soon as I finish this, I'm going off to watch.

17:23
Well, my year 6 who's, who's doing his transition to secondary school and there is school plays and there's this and that and every day there's something else.

17:33
And certainly in Harry's first year of life, pretty much every time the other children were doing something, Harry would be unwell, which, you know, so we'd have to keep making changes very quickly.

17:44
And that impacts them.

17:46
And obviously they're older so they can Google things, you know, and that's really difficult.

17:52
I think it was for my daughter, who is now 15.

17:56
I think Harry's diagnosis was very challenging because she was that age where she was old enough to understand that it could be life threatening, but probably not quite at the time old enough to sort of understand all the implications of it.

18:09
Now she's older, she she can look at that in a in a different way, but when she was younger and and dealing with that at the same time that that was that was quite challenging.

18:21
My oldest son is 19 and has now always had a caring role for for a long, long time since all through Harry's life, you know, it wasn't uncommon for us to be having dinner.

18:31
Often Harry would vomit after eating and he would just So we're up and we get back in the and it was quite normal.

18:39
He can now drive.

18:40
And you know, some of the couple of times that Harry's been unwell recently, he's done the driving into the hospital with me sitting in the back or the other day he was in the back while I was driving in.

18:51
He's worked out this is quite a good way to attract nurses, even though he has an amazing girlfriend, because he will run in with his brother in his arms and everyone thinks that's that's very nice and he gets a cup of tea.

19:02
If I run in with Harry in my arms, nobody brings me a cup of tea.

19:05
So he's figured out this is, this is, this is quite a good way to be a 19 year old hero.

19:10
But it's, it's, it's challenging.

19:13
I, I remember when he was younger at school, he got in trouble because Harry had gone into surgery.

19:19
And then he'd called us and obviously Harry had been a lot longer in surgery than we told him.

19:24
And he got told off for using his mobile phone, but he was actually using his mobile phone to find out whether his brother was still alive.

19:31
But you know, as a young lad at secondary school, he's not going to tell them that he's upset.

19:35
He's just going to get take the Flack at school because he's been told off that.

19:40
So, you know, children aren't particularly young lads aren't particularly good at saying I'm really scared.

19:46
So, yeah, sounds like you have incredible children that are so helpful and loving and caring towards Harry.

19:52
And, and I'm sure as challenging as it has been that the IT must have entailed a lot of growth and, and having to learn responsibilities quickly and to learn about life, if it gets quicker than most, most of their peers, they're very resilient and they're very they're I'd say they're very kind children.

20:12
They they've learnt you know, you know, to to embrace friends with differences and and a couple of my children have friends who have got.

20:20
Different physical conditions and things and they just, they're very accepting.

20:24
Doesn't stop them from living little rat bags and it certainly doesn't stop Harry from winding them up beyond belief.

20:30
So we're not, you know, sort of all Little House on the Prairie all the time.

20:34
I think we're still fairly feral.

20:36
But I'd say it's also sounds like you've been able to recognise how they might be feeling and the challenges that they might be experiencing having their little brother have hard Cephalus and how hard that must be for them.

20:51
I just what, what do you think this has helped them be resilient and have that kind of.

20:56
We were very proud of our daughter when she was in year 7.

20:59
She was quite a shy child to start and she had, we moved and she, she started at a new school and then we heard from her teachers and, and not anything we had not encouraged her in any way to do it, but she stood up in front of her whole year and pitched for Harry's.

21:18
How do you Capitalist awareness trust the charity we run to be their house charity.

21:22
And she'd, unbeknown to us, she'd taken some of the charity resources in and was showing off the book and things like that.

21:29
And we were gobsmacked because she was actually quite a shy child at that age, yet it made her feel that she wanted, wanted to do something.

21:38
And now we're still the house charity.

21:40
So she did a good job Captain at school after that as well.

21:46
So I think it's just being honest with them.

21:50
We've never said to them, we've never told them what they want to hear sometimes, which is that he will be cured and he will be fine because that's not fair.

21:59
And quite frankly, we live in a Google generation now anyway.

22:02
So if they want to they look something up, they will.

22:06
We've tried to encourage them to be honest with us and to ask us questions and if we can't answer them we will find somebody that can.

22:15
Vicky through the charity who runs our sort of family support programme, she, she does a lot of support for young people who are effectively young carers.

22:26
And Harry's benefited from, you know, the, the work that Vicky does in terms of helping with building his resilience and, you know, helping him own his hydrocephalus.

22:38
I suppose she does a lot of that, which has really helped, you know how she does that.

22:44
Does she help them to accept she's she's very, very talented at her job.

22:50
Some of the stuff she does is gently getting them.

22:54
They do a lot of activities.

22:56
I can show you they make kind of crafty activities and things like that, which I've got on my desk here.

23:02
But they alongside that, she gently probes.

23:06
So while they're doing an activity they will talk about anything that worries them, you know, and for for a lot of children, it's meeting other children who have the same condition.

23:17
So we do through the charity, we do a lot of family events where people meet up.

23:23
And often for children with hydrocephalus, it's the first time they've met another child with the condition.

23:28
They might have seen each other on the ward, but they're usually too poorly.

23:31
But to see each other and be playing in the park or, or whatever, you know, you wouldn't know if you saw Harry walking down the street.

23:39
You would have no idea that what's under his mop of beautiful blonde hair that he has is, is the shunt that keeps him alive.

23:46
You wouldn't have a clue.

23:47
In fact, he's so ribunctious, you would look at him and think he's sort of leader of the pack.

23:52
He's quite a confident child.

23:53
He's quite accurate at football.

23:55
So you know, you, you wouldn't realise there's anything different that's so amazing that he is able just to kind of live his life as as well as possible.

24:05
And that quality of life, I wanted to ask you a bit about we've kind of heard about how things impact how how his condition impacts his siblings.

24:18
Can I ask you a bit more about how how his condition effects you and your husband and how you cope with everything that you're dealing with and the kind of risks that I guess there that you're trying to manage?

24:34
Yeah, Yeah.

24:35
I mean, I think it's got easier.

24:37
I think in the first year it was really difficult because we didn't know what it was, signs of shunt blockage and what was just that he picked up a bug That was really difficult.

24:48
I think both me and my husband, we, we act as a team.

24:52
I'd have to say that, but I think we certainly have disagreements in terms of I'm probably the one that's quicker to say, right, we need to go to hospital.

25:01
He's more of a watch and wait, let's see how we go.

25:05
I usually get my own way, but I think that can be challenging.

25:13
But ultimately we've got each other's backs and we are a team and we, you know, we know that for some bits we've also agreed on.

25:24
There are parts of it that I find really difficult and there's parts that he finds really difficult.

25:30
You know, we, we've, we've Matt's, we've both got really good family backup, which I think is really important.

25:39
My dad's been quite a good sounding board for Matt as well, because he recognises that it's quite tricky the Blake and he will deliberately ask how math it is and he will deliberately phone Matt to say how are you, which I think is quite good because everybody worries about the woman.

26:00
But it's often the, you know, the the other part of the world who who who's struggling was a little bit.

26:08
So that that's quite good.

26:11
But yeah, it's been challenging.

26:12
Yeah.

26:13
Just curious to know what suits Harry most, if you got a go to strategy or something that he finds having us.

26:19
Yeah, very much.

26:21
He's still always it's it's quite close, you know, needs, needs us, needs to know.

26:29
He's very, he likes to know exactly what's going to happen.

26:33
So who's going to stay with him if if the other parent can't stay when they're coming and, and that sort of thing.

26:40
And that makes them a bit more comfortable.

26:42
And we use, you know, good old, you know, iPad and, you know, kids YouTube and stuff like that.

26:49
And he'll sort of go into his own and and watch that stuff.

26:54
I'm just curious to know, just going back to the hospital settings, is the things that they do in the hospital that you've noticed to make some sort of adjustment for him to help him feel a bit more soothed or a bit more able to tolerate the procedure?

27:07
I think that's quite an idealistic aspiration given the capacity of the hospitals.

27:14
If, if the hospital is, if we are lucky enough that we are there on a day where it's not as busy, which is just unheard of, then they will try their very best.

27:26
But the reality is that the wards are massively overcrowded.

27:32
There isn't enough space.

27:34
You know, it's, it's, it's difficult.

27:37
So they will be as kind as they they can be, but there isn't the space.

27:43
So there's very little that can be done to add that extra support.

27:50
And I think you have to be realistic about that.

27:53
If the shower is not working and the, you know, the light above is, is, is bad, isn't working properly, then the rest of it, you know, it's always quite chaotic.

28:05
And that's because the, you know, in times of where he's treated, which the medical care is very, very good, the physical environment isn't so great.

28:16
So, yeah, it's understandable why he kind of leans on you to protect him through all of that.

28:21
It's noisy and it's intrusive and, you know, sometimes as much older children on the ward, you know, it, it it's, you can't paint a picture of it being an ideal place to recuperate.

28:35
You're desperate to get out, and that's all there is to it.

28:39
Yeah, well, I'm given the amount of time you've spent in hospitals and the stress that you've been undertaking, Harry, they're like, what would be your advice for other parents, the caregivers having to access health hospitals for their child?

28:53
For me, it's about not worrying so much about the physical surroundings that your child's been treated, that building the trust in the professionals that ultimately keeping them alive.

29:04
They become, I've become quite close to them and I have to learn to trust them and, and building that trust is really, really challenging.

29:14
I, I think the difficulty and parents with children with, with complex conditions will tell you when they're, when they have a specialist hospital and when they have a local hospital and the child gets treatment at both places.

29:28
Sometimes you just want to bash people's heads together.

29:30
It's probably not the right phrase to use, but you get different advice from different people.

29:35
And one thing I would always say is to, I would plead to medical professionals is please be respected, respectful of each other because when you're a parent in the middle and you are trying to navigate it and you get somebody at district general going or why did they do that?

29:55
I don't know why they did that.

29:57
I'm not the medical professional that don't put don't put you know, each other down in front of the parent because it makes it really, really difficult to you're built.

30:07
You're trying to trust those people in because you know with your child and when they question each other's practise, that's that's really, really difficult because as a parent you're like, then why?

30:19
What I what incentive to what if I allowed to happen to my child?

30:23
Yeah.

30:24
And so that's what you would say to the health professionals.

30:27
You'd say like be respectful of each other.

30:28
But what would you say to parents new to the situation, going into that atmosphere or like how would you, how would you ready them for that situation?

30:39
I'd tell them to to research the condition.

30:42
I'd tell them to contact us.

30:45
I'd tell them to read our book because it's first person lived experience, but I'd tell them to be kind to themselves.

30:52
And it's not nice.

30:55
And that's OK to feel that it's not nice.

30:58
You don't have to be brave all the time, you know, Be respectful to the people who are whose job it is to keep your child alive.

31:08
Be respectful to the people who are there who clean the wards to keep your child alive.

31:14
Be respectful for everybody whose job it is there to help.

31:19
You know, there's no excuse to be unpleasant, however you can be sad and I think that's that's OK.

31:27
And if you're the children are being treated in some of the hospitals that still need investment, it's OK to feel that some of it's not not very nice.

31:39
You know, I think it is difficult and I think for me it's not comparing my child's journey.

31:47
We're very lucky at the moment.

31:48
Harry has had an awful first couple of years of life and has had a brilliant in the last three years or so have been really, really good.

31:57
And he's had, you know, very few inpatient admissions.

32:01
It's been a lot, lot easier than the start.

32:03
But the start was really difficult and I was looking at other families and how well their child was doing and mine perhaps wasn't doing as well.

32:10
And what why is that happening?

32:14
You know, every child is completely different.

32:16
We are incredibly lucky that so far Harry has done a lot better than his brain scans when he was initially diagnosed would lead us to believe.

32:30
But that's luck.

32:32
And you just don't know what the outcome is going to be.

32:35
So it's sometimes just because there is another family posting online about their child's condition, which might be the same condition as your child, doesn't necessarily mean the outcomes are going to be the same.

32:49
Yeah.

32:50
Are we here time and time again how helpful social media and Facebook can and so forth can be with regards to connecting with communities and and getting that support.

33:01
But there can also be that double edged sword, I guess, in terms of that comparison or the kind of anxieties that actually can manifest from hearing about other people's experiences for the better or for the worse.

33:14
I guess definitely, I think the thing that I would always warn people against is going on some of the unregulated groups.

33:25
So there's a lot of sort of, you know, online support groups, make sure they're run by registered charities and that they're checked because people only post on those on the worst day and the worst moment.

33:39
And then they forget to go on two weeks later and say, actually, everything's OK.

33:44
I can remember going on one of those groups when Harry was first diagnosed and a child had passed away.

33:51
And it just threw me now.

33:53
And, you know, the child might have passed away from a shunt blockage.

33:59
It was completely unexpected.

34:02
Or they might have.

34:04
Either way, it's horrific.

34:06
But I didn't know the context to it.

34:08
So the minute I read it, I just assumed Harry was going to die.

34:12
And that was really, you know, it's not good for your mental health.

34:15
It's you don't know the context necessarily on what people are posting.

34:21
But I was just totally terrified after I I read that the charities tend to regulate what is posted on there online of groups.

34:33
So if anything is put on that's medically incorrect or anything like that then you know they will intervene.

34:43
I would also say please don't post on these things with my child looks like this.

34:48
Do you think I should go to hospital?

34:51
Don't ask people.

34:53
Ask your neurosurgeon because or go to the hospital because they're the only people that can tell you.

34:59
I like your reminder though that that you're you're like Harry has hydrocephalus.

35:04
Other people in your charity who are accessing your support also have a child with hydrocephalus, but they also have different individual needs and personalities and things are different.

35:14
And to recognise that and remember that.

35:17
And it's so humans to compare ourselves to other people or parents to other parents.

35:23
But, and it's hard not to, isn't it?

35:26
Because that's actually is what we do.

35:27
But I love how you kind of recognise that in that importance of compassion for yourself and for other people.

35:35
Yeah.

35:35
And everyone's journey is completely different.

35:38
I, I think that's really important.

35:40
I mean, we're, we're in great pains to say that with the charity because we recognise that Harry looks a bit like a Bodom model anyway.

35:48
He's, he's a, he's a cute looking little kid.

35:52
He, he's actually done really well.

35:56
We've been very, very lucky.

35:58
But so far, but that's not the story for everybody.

36:04
So he's not representative.

36:06
No child is of a child with the condition.

36:08
There isn't such a thing that, you know, you can't look at pictures of Harry and say this is how my child's going to be fine.

36:17
It's different for everybody.

36:18
So we, you know, everybody's story is is different.

36:23
I think that's really important.

36:25
Yeah.

36:25
And it's it's the difference for the the child and how they're doing medically and physically and emotionally.

36:33
And then there's also the differences within the family dynamics and the kind of personalities and abilities of the parents because described so beautifully, kind of the, the enormous weight of the professional relationships that you have in hospitals and how they impact on your experiences there.

36:50
And, and how you need to advocate for your child and you need to kind of protect them within that environment because the staff might not have time.

36:59
And we're very aware that not all parents find that easy or some might find it incredibly hard to to to be that strong advocate for their child within those settings.

37:10
Would you have any advice for for those parents?

37:14
I mean, I don't really because it is it is so challenging.

37:18
And I think one of the things it's more flipping it round in terms of, I think everyone wants to give advice and sometimes it just isn't there.

37:28
It's really difficult.

37:30
It's more about health professionals recognising that sometimes people have been in the hospital for like months or long stretches and they're tired and they're exhausted.

37:40
So, you know, one of my things was if I knew they were going to do the wardrobe, I'd always try and have a shower beforehand.

37:47
So at least I felt like I could, you know, just feel a little bit more human when I was dealing with them.

37:54
But some of it is learning the other side from how they talk to parents.

38:00
Yeah.

38:00
I hate it when they come and talk to here's Mum.

38:04
I'm not Mum, I'm Caroline, I'm.

38:06
I'm Harry's mum.

38:07
You know, we're individuals.

38:10
I hate it.

38:11
I know students have to learn and that's really important and it's part of what we set the charity up to fund.

38:17
But, you know, don't bring a whole load of people and then ask me if it's OK.

38:23
Ask me before they all turn up and they and if the students are there, get them to introduce themselves.

38:32
There's nothing worse than, you know, you're there sitting down, They're all standing up and leaning over you.

38:39
But it's, it's tricky.

38:40
But I think there's a lot of good intention.

38:43
And everybody wants to say, oh, give this advice, all that advice.

38:46
Actually, sometimes it's just really hard and it's making sure that, you know, you can say make sure you take time for yourself, make sure you do that.

38:56
But that's not the reality for a lot of people.

38:59
Some of the mums and dads or carers are doing this on their own and they're balancing this between having to, you know, then try and hold down their jobs or dealing with their other children.

39:10
You know, you can say take time out and do this, but if there's nobody else there to look after your child, then that's not realistic.

39:17
So I don't really want to give advice that for some people just isn't there.

39:23
Yeah.

39:24
It's making me think how important it is just to sometimes sit with those unpleasant feelings of like, yeah, it's just acknowledge it's really hard.

39:32
Yeah, but not try to cure it with things where, yes, I can give lots of advice.

39:39
So that's from the viewpoint of having my husband of, of, you know, I run this charity.

39:47
I have the most amazing board of trustees.

39:49
If Harry's sick, not one person is going to tell me off for taking time off.

39:52
So I'm lucky you know, I've got my mum and dad who are still alive as as you know, grandparents a lot of, but a lot of people don't have that and still able to come and help a lot of people.

40:07
Don't have, you know, grandparents support as well?

40:10
Matt's got his parents, you know, he can come as well.

40:15
People.

40:16
I've got an old older son.

40:17
As I say, he's brilliant.

40:19
His girlfriend's amazing.

40:20
They can sweep in.

40:21
When we were away, we took them away.

40:24
We and we were in France and Harry got Pauline and needed to go into hospital for a day.

40:29
They're old enough to look after our other children, while we just could look after Harry.

40:35
Not everybody is in that that fortunate position.

40:39
So I think for some people it's just really hard.

40:44
Yeah, yeah.

40:45
And that's where charities such as yours are just so instrumental to normalising the fact that it is hard sometimes trying to cut.

40:57
And people tried to do that with us when Harry was first coming up with solution.

41:00
And when the solution doesn't fit their family dynamic, it actually is causes more problems.

41:07
Yeah.

41:07
It can have more of an emotional toil, definitely.

41:12
We just have one final question for you, if that's OK, which is around if you had one wish for how healthcare settings could do things differently to support children and better way, what would your wish be?

41:27
Gosh, there's hundreds.

41:30
I would say it's about making it a more comfortable, more private environment, I think, But that is very much dependent on where you are treated.

41:40
For other families that might not be there, the main wish, but where Harry is treated it is quite chaotic and there is limited space.

41:52
And I remember trying to breastfeed on the ward and there was a family who weren't very nice and the dad was making rude comments about breastfeeding so never felt particularly safe.

42:09
And I think my other thing is so important is that they speak in a language that parents understand.

42:19
Now I'm educators, I've worked at senior level and I've still come across clinicians who speak to me in terms I do not understand.

42:30
And that's really, and I'm confident enough to say, hang on, I don't understand what you've just said.

42:35
Can you explain it to me?

42:36
But and that's luck and that comes from from the jobs that I've done.

42:42
But for, you know, when they speak over you, there is there is no excuse for that.

42:48
And, you know, you then lose any sort when you're in hospital, you lose, we lose your rights over your child anyway, because ultimately the, the the hospital has has the rights.

43:01
But you lose your sense of identity.

43:03
You lose, you look awful.

43:05
Which, Yeah, well, in my case, I don't.

43:09
You're exhausted.

43:10
You know, you've got all those going.

43:13
So you lose your sense of self as it is.

43:16
And then if they are speaking in terms you don't understand, you've become really frightened.

43:20
And I think it's also bearing in mind, and I know I've worked on the other side, you know, where you see lots and lots of families and it's, it's really difficult, but to sometimes reflect that their everyday is often our worst day.

43:38
And it's that side of things.

43:41
You know, we may just be a number, but it is often the worst moment.

43:46
Handing over my child for surgery is the worst moment of my life, is the worst day, is the most scary, particularly if it's major surgery.

43:56
And I know that's routine and that's their job, but it's recognising that that is really, really challenging.

44:05
Yeah, that's, yeah.

44:08
That's such powerful stuff, Caroline, and it's absolutely see how vital all those things, those elements are.

44:15
We're so grateful for you coming in and talking to us today.

44:17
It's a pleasure.

44:19
That's helpful.

44:20
So inspiring to hear about how you've turned something that has been so difficult for your family and challenging in so many different ways into something that's been able to help so many different people and continues to raise awareness and, you know, pushing for policy changes and reviews of guidelines.

44:37
And I mean, it's, it's amazing.

44:39
And I wish you all the very best.

44:42
We have really enjoyed talking to Caroline today.

44:45
For more information about her amazing charity, Harry's Hat, please do check out their website or find them on social media.

44:52
We also want to thank our listeners for joining us and our fabulous team at Little Journey for making this episode possible.

44:59
If you want to be notified of new Spotlight sessions, please click Subscribe on the Little Journey YouTube channel.

45:05
Bye bye.