PHACE syndrome: Katie and Molly

Katie’s daughter Molly has a rare condition called PHACE syndrome. She had a stroke when she was six that affected her motor skills. At first, she was unable to swallow, speak or walk. Katie tells their story.

Published: April 2012. Date of brain injury: 2009. Child's age at time of injury: 6 
Daisy, Katie and Molly
Daisy, Katie and Molly

  Molly was diagnosed with PHACE syndrome when she was about two and a half after she had a very minor stroke. But nothing seemed to happen after her diagnosis. She was no different to any of her friends; she loved horses and spent her time riding her bike. But in August 2009 she was staying with my mum and dad during the summer holidays when I get a phone call saying she had collapsed. We ended up at the hospital, where they confirmed she’d had a brain haemorrhage. They tried to operate, but she had a subsequent stroke in another part of her brain.

At the hospital

From that first morning she was ill, I don’t think we went home for a couple of weeks. We were given a room to sleep in, but it’s very surreal because there isn’t a lot you can do. We didn’t ever leave Molly on her own – one of us would sit with her at night. So we were sleeping for about three hours at a time and taking shifts. But you wake up in the morning and it hits you again why you’re in that room. You’re constantly checking the phone in case you’ve missed any calls. Daisy, Molly’s sister, was only four at the time. I’d phone a friend the night before and say: ‘can you look after Daisy tomorrow?’. My mum and dad didn’t live too far away, but at one point Daisy got a bit upset about going home with them – I don’t know if it was because Molly had fallen ill at their house. The doctors at the hospital can’t tell you how things are going to be in the future. We put up lots of pictures of her that were taken before she was ill. When doctors asked what she was like before she fell ill, we would point to pictures of her riding a horse and say: ‘that was what Molly was doing just last week.

Back at home

We had two months at home after the hospital and before the rehabilitation centre. I know it can be very hard for people going back home, but I have to say we felt a bit more like we had more control after being at the hospital. We did have help from a physiotherapist and a speech and language therapist, and the community support was put into place immediately. I think you do have to be quite assertive sometimes. We basically told the hospital the date that we were going to take Molly home once they said she was stable. They were talking about lots of different arrangements that were going to take a long time, but we insisted that things were easy to put in place. We put the pressure on, and we took Molly home when we said we would.

Brain injury can be hard to explain

A few people would ask if Molly had MS or something else, but when we explained that she had a stroke, people would be surprised. People do associate it with older people. I think it was quite hard for the children in Molly’s school. Before she came home I sent the head teacher an email to read to the children to explain what had happened. I said that the other children might see Molly around the village, but because of the way her brain had been hurt, she wouldn’t be able to smile or talk to them. But it was important for them to know that she was still Molly – inside she’s smiling and she does recognise you. We had these little benchmarks in Molly’s progress. Like the first time she smiled a bit, and when she laughed – no sound was coming out, but her shoulders were jiggling. It’s things like that that can make you go crazy! You have to forget all the things your child can’t do, and start to focus on, and celebrate, every little thing that they can.

Back at school

Molly went back to the school she had been at before. It’s a small school – there are only about a hundred kids there, and the staff were just brilliant from day one. When Molly was in hospital they sent in tapes of the other children reading stories and singing to her and you could see she recognised her friends’ voices. The school fought very hard to get Molly back there. They made a lot of changes and made sure the school was completely accessible for her wheelchair. Molly went back a year when she returned to school, so she was in the same class as her younger sister Daisy. I think Daisy liked being able to look out for Molly, and initially she did act as a kind of translator sometimes. Molly's speech has improved greatly, but even now my husband sometimes says: 'Oh Daisy, what’s Molly saying?'. This year the girls are in separate classes, which is I think is a good thing because they can be a bit more independent from each other. But Daisy does miss her sister.
Molly came home from school sick one day and the teacher said Daisy had been worrying about her all afternoon. We’re trying to break that feeling of responsibility she has, so she can have time to be a little girl. Sometimes we say: ‘You’ve done a fantastic job, but actually it’s time for you to be six-year-old Daisy now’. Daisy won a WellChild award for courage and kindness, and she got to meet Prince Harry. She was a bit starstruck and went very quiet!”

The media

“There was a bit of press interest in Molly when some of the local mums decided to do a sponsored run. It was amazing. They raised a lot of money, and I think that got people interested in Molly, and PHACE syndrome. There were stories in the local papers and national press. We had a fairly positive experience, on the whole.”

Making adjustments

“I think it was really important to us to realise that Molly could still do lots of things – it was just about finding different ways of doing them. Molly goes swimming now, she rides horses and a tricycle. And she’s learning to ski in a sit-down ski. She fell out of her wheelchair playing tag in school, and while you wouldn’t want that to happen very often, there’s something positive about her wanting to get up and tag someone rather than watching from the sidelines. She’s just playing the game in a different way.”

Looking back (and ahead)

“The people at the hospital couldn’t tell us how things were going to be for Molly in the future. But people said you might be surprised at how kids can just get on with things. I think kids can wake up and say to themselves: ‘I’m in this situation, but I’m still a kid, and I still want to play and have fun’. I think you have to keep things in perspective. People sometimes say they don’t know how we coped, but you just do. I think you have to say to yourself that it’s okay to be sad every now and again, but we’re very lucky and we still have our daughter. As long as she enjoys her life and gets the most out of it that she can, then I think we’ve fulfilled our role as parents."
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