20/06/2011 Inside Out West

This is Abigail. She's always hated being disabled. Every single year,

Christmas and birthday lists the top one is not to be disabled.

she has ever wanted is to be able to walk. She crawls on the floor

and she really doesn't like crawling on the floor, at nine

years old she wants to be upright like we all are. Now her dream

could be about to come true. Abigail is to undergo a radical

surgical procedure which has helped hundreds of children with cerebral

palsy to walk. Everything is at stake. The last six months have

been... Sorry. Very stressful to get to this point but this is what

Abigail wants. This is what she's dreamed for and until we found out

about this there was no hope. At To find that hope, Abigail's family

has had no other choice than to travel to the US. Here at the St

Louis Children's Hospital, one man has spent nearly 25 years refining

a pioneering technique. I have done over 2,000 children from some 43

countries and we deliver and we improve the quality life of the

There are hundreds of children across the UK who could benefit

from this surgery but the NHS has been reluctant to fund or develop

The NHS has treated families with children with cerebral palsy

absolutely terribly. But things could be about to change. Beau

Britton is hoping to become the first child to undergo the

groundbreaking surgery in this He's unable to stand or walk

independently on his own. So I am hoping he will be able to gain a

little bit more freedom and a little more independence in his

every day life. This is the story of two children, each with a dream

of walking unaided for the first It's summer 2010 and Abigail's

sister is raising funds to help And Abigail is lending a hand.

Abigail's just an amazing child, she is talkative she is sympathetic.

Her sense of humour is incredible. Abigail was born 14 weeks early by

emergency Caesarean when her mother Carrie developed liver failure. She

weighed just one pound, three ounces. When I think back to

looking at her in her incubator and wondering what sort of person she

would be I never dreamed she would have the Her character is just

She has a real thirst, a real hunger for life. Her premature

birth left Abigail with plastic cerebral palsy. It's made every

step a struggle and her life one long fight against disability.

feel lonely. I feel angry about it sometimes. I feel cross and I want

I don't really like being defeated by illness. I don't think you are

defeated because every illness you've had you have got better from,

haven't you? Yes. At her home in Bradley Stoke on the edge of

Bristol, Abigail depends on help from her family for nearly

everything she does. She needs special transport to attend her

local primary school. And she has an assistant alongside her

throughout the day. Good girl, your spelling is fantastic today, you're

on fire. I only got nine out of ten. She also helps Abigail with her

physiotherapy. Lovely walking Abi, well done. I've known Abigail now

for five years since she joined school. She is the most loveliest

little girl in the world. Let's see how long you can hold your balance

for. Are you ready? OK, are you going to count in Spanish? Unos,

dos, tres. My wish for her is that following this operation she can do

all those things she yearns for. The operation Abigail faces is

called selective dorsal rhizotomy or SDR. It involves testing which

spinal nerves are causing the stiffness and painful tension in

the legs and then cutting the roots. Leave this one. Cut number two.

original basic SDR procedure has been around for years but there

have been concerns it is too invasive and risks causing spinal

So here at the St Louis Children's hospital in Missouri, Doctor TS

Park and his team have spent years improving the SDR technique.

made it basically much less invasive and as a result we can use

this operation on older children so we can benefit more patients.

Park has so refined the procedure he can now perform up to three

operations in a day with remarkable results. The big advantage of this

surgery is if the child or anybody has spasticity they cannot do the

regular exercise because as they move fast their muscles get tighter

This procedure, rhizotomy, is the only procedure that can reduce

spasticity permanently. But Dr Park's version of SDR has not been

used in the UK and parents say few are told about it by the NHS.

Abigail's family found out about it from a friend. I couldn't believe

there was something that could change our lives so dramatically

and we're not doing it here. I can't fault the treatment Abigail

has received from the moment she arrived into this world. It's been

incredible but we just want the best for our daughter and if that

means carting her across the Atlantic to give her a better

future and a more independent life then that's what we're going to do.

More than 70 children like Abigail have travelled to St Louis from the

UK, each raising around �40,000 for the operation and aftercare in

For Beau Britton, from Kelly Bray in Cornwall, everything rests on

the operation coming to the UK. How's your foot feeling in that

one? Is that OK? His parents are desperate for him to have the SDR

procedure. He's unable to stand or walk unaided. He needs splints to

walk with his little walker or with quadra-pods. With aid he can do a

short distance of walking but it's very laboured, it's very intense.

Basically what we're hoping is that by having the selective dorsal

rhizotomy it will enable him to stand hopefully independently.

Abigail, Beau was born prematurely. There was no particular reason why,

he just started spontaneous labour, and he sustained a bilateral bleed

in the brain, we believe during the birth, and was diagnosed at three

weeks with bilateral brain damage. Beau defied the doctors' initial

fears that he would be unable to walk at all. That was the worst

case scenario. As you can see he's actually a lot better than expected.

And we've been really lucky that he's managed to achieve a lot of

the goals in life even though a bit slower than somebody else. It was

only when Beau started at his local primary school that he realised how

much tougher life is for him. came home one day and was very

upset because he couldn't play football and he said, Why can't I

play football, followed by Why can't I run, why can't I walk and

it was one of the first times we've sort of had the conversation with

him. He understands entirely about cerebral palsy and brain damage and

what happened when he was a baby, and we've been very honest and talk

all the way through it. We're not expecting a magic wand, but we do

hope that he will be able to one day stand up, and walk even with

aid, more comfortably. So why hasn't Dr Park's procedure been

available in the UK? NICE, the National Institute for Health and

Clinical Excellence, publishes guidance for the NHS. In 2006 it

gave only a guarded assessment of SDR. Parents claim that the NHS has

all but ignored the US operation. It's like they are putting up a

brick wall straight away and it's just not being brought to people's

attention. They think that they know best about their treatments,

and they don't want to support us, to get our children to be able to

live a better life after SDR. Autumn 2010 and things could be

about to change here at Frenchay Hospital in Bristol the first steps

to bring Dr Park's procedure to the UK are being taken. Kristian

Aquilina is a consultant neurosurgeon. He's been appointed

to develop the operation. He trained in the new SDR technique in

America and has studied Dr Park at work. I must say the affect it has

on children is quite remarkable. It clearly does make a huge difference

in the way they walk, in the way they can carry themselves and also

because they become more confident in their general well-being.

for the procedure to work there has to be intensive aftercare and the

funding is not yet in place. surgery itself is not particularly

expensive. It's fairly basic neurosurgery, what may be a little

more expensive is the physiotherapy and the long-term rehabilitation

they need. These doubts over funding means it could be months

before the first operation can take place. Too late for Abigail but I

still think thousands upon thousands of people will benefit if

this is one day available here. the meantime, children like Toby

Cox, from Bristol, are proving the worth of Dr Park's procedure. Five

months after Toby's operation in the US, Abigail is paying a visit

to see what she can expect. Look at your legs go. Oh my goodness me.

That is quite incredible. He hasn't used his wheelchair for weeks and

weeks and weeks. During the day at school he walks everywhere. You

show Abigail how tiny your little scar is. Go on Toby. Oh my goodness,

that's the tiny little cut that they make and that's the bit that

has changed Toby's life forever. Toby said things are a lot easier

when you are not tight. We can't understand how he feels but just

saying that makes you understand that everything everyday was so

difficult for him now it is that It's December 2010 and Abigail's

family have made the long trip to the children's hospital in St Louis.

The operation will take up to five hours and Abigail will stay in

hospital for five days. She'll be really sleepy. She will have a lot

of medicine on board. Dr Park will be operating in a small area close

to the end of Abigail's spinal cord. X marks the spot. Talia if you're

going to say goodbye you need to do it now. She knows exactly what the

procedure involves and what it could mean for her chances of

leading a more normal life. This is going to be the start of the rest

of your life. The start of being less disabled than you are now.

It's what we've wanted. It's what you've always wished for. It's not

a time for being sad. It's a time to celebrate the rest of your life.

Likes will guide you are home and ignite your bones... And you will

During Abigail's operation, Dr Park will cut the sensory nerve roots

that are causing the spasticity in her legs. To do that, he has to

remove a section of bone from her spine. What sets Dr Park's

procedure apart from other SDR operations is the amount. Where

other surgeons may take bone from several vertebrae, Dr Park will

only remove it from one. It's less invasive but there are still risks.

This operation is more technically demanding because we expose a very

small area about an inch long area and there are spinal chords, a

bunch of nerves, so if anything Dr Park then divides the nerve

roots into three to five rootlets The responses from the muscles tell

him which rootlets are causing the spasticity and need to be cut.

We're hoping today's operation goes as well as it possibly can. That

the nerves that are causing the spasticity are the ones that are

We don't want any other ones cut. We don't even want to go there, but

obviously that is the risk you take by being here, and that is why we

have to trust Dr Park and his expertise of having refined this so

Five hours later, and the operation is finally complete. Thank you,

It's all done, all over, you've got The next few weeks see Abigail

undergo the intensive physiotherapy that is vital for the procedure's

Three weeks after the operation, and she's ready to show Dr Park her

What did Dr Park say? Excellent is what I heard. For Abigail, a long

road to recovery still lies ahead. What's our next goal? To succeed.

Yeah, and we'll do it, won't we? Back in the UK, the situation has

moved on. NICE has reviewed its guidelines on SDR. A Primary Care

Trust is now willing to fund an operation. A few months have passed.

We have been quite busy building up a team of very committed

individuals who are very keen to develop the cerebral-palsy service

here in Bristol. Kristian Aquilina and the paediatric team at Frenchay

have been evaluating a number of patients to find the best candidate

for the first operation. This will be on a six-year-old boy who has

significant difficultly walking. This boy has everything else he

needs. Hand function is perfect, he is cognitively extremely good, he

goes to a normal school and is doing very well at that, he's got

an extremely supportive family. We're very fortunate, I think, to

find such a first patient, to be For Beau, the waiting is over.

boy. So he's going to go too? OK. He is finally to have the SDR

treatment that could help him, right here in the UK. I'm going to

So, what do you think then? You going to be OK? Mummy's going to be

with you and Daddy. It's going to It's the day of the operation.

You're going to have some time with Kristian, aren't you? He's going to

do some leg-fixing. It's a very, very exciting time. In a few hours'

time, Beau will have become the first child to undergo Dr Park's

procedure in the UK. I'm not sure how long it's going to take. About

five hours? Probably about four to five hours, I think. Kristian is

confident all will go well, but there are risks of complications

and side-effects. As you know, the bladder may not function perfectly

immediately after the surgery, but any disturbance will hopefully be

transient, and after a few weeks it It's operation time, and tensions

We really want to fast-forward time and have them come out the other

end safely and as quickly as possible, so there's probably going

to be a lot of clock-watching today until he's finished. We have every

faith and trust in Kristian and his While Kristian may have trained in

the SDR technique, only one other member of today's team has ever

seen the surgery carried out. He's the neurophysiologist, who's on

hand to monitor the nerve roots during the operation. Let's say

this is L3 rootlet number one. Dr Park, Kristian electronically

tests each rootlet. It's essential he cuts only those nerve roots that

are causing the spasticity in Beau's legs. Severing the wrong one

could cause bigger problems in the long-term. This is where it is

important to undertake the selective part of the procedure,

because by selective we mean that you choose the nerve roots that

need to be divided. We only select the ones that contribute maximally

to the spasticity in the legs, and we preserve the ones that are

important for the function of the legs and the bladder. While the

operation continues, all Beau's Sorry. He's in the best-possible

hands, I know that. But those hands don't just hold the key to Beau's

future. If the procedure goes well, it will prove its worth to the

wider medical community and encourage more Primary Care Trusts

to fund further operations. I think we should be able to do one or two

a month at this point. That depends on whether we will be able to

increase our level of resources at the moment. We have completed and

received results from three different Primary Care Trusts and

we're very delighted to see that all three of them have accepted to

fund selective dorsal rhizotomy. It's fantastic, and the Government

and the health authority and all the Primary Care Trusts, whoever's

involved with this needs to sit up and look at what this doctor is

doing. He is changing children's lives. Nearly five hours later, and

the procedure is complete. It all went as expected, and obviously you

can't evaluate the result at this early stage, it's just the

technical part of it. We just have to see how he goes on over the next

few days and, more importantly, over the next couple of months, and

then take it from there. Beau is coming round. Mummy. You want your

mummy? She is on her way right now. His operation marks a milestone in

the treatment of children with Thank you. It is a pleasure. He

wants to see you. Here's Bunny. Mummy and daddy are here now.

will now stay in hospital to begin the physiotherapy that will be

vital to his progress. It is this element to the overall SDR

treatment that could cause the biggest headache to NHS accountants.

These children do require a course of physiotherapy after surgery.

It's not enough to do just the operation on its own. Of course, we

have been concerned that the set-up of community physiotherapy in this

country may not have the capacity to absorb some of these patients.

You can't just do SDR without physiotherapy. The children

desperately need the physiotherapy to get them mobile again. They need

that rehabilitation. So I think the Government and the health authority

need to look at this and re- evaluate how much physiotherapy

they give to the children, because they need it. Abigail's family have

had to pay for their own private physiotherapist. Throw. So far,

Abigail's improvements after the operation show it's been worth it.

She can only get better over the next few months, because we are

only halfway through the first 12 months to see where we can get to.

From the progress she's made so far, it's all good. She's hungry to get

more. She wants to get her ultimate goal of walking across that room,

It's a fortnight after his operation. Happy birthday. And Beau

is celebrating, How old are you? Seven. But even today, there's no

let-up in his intensive physiotherapy. 17, 18. It's already

helped him to make a remarkable recovery. Well done, Beau, you're

doing brilliantly. And it's given him a present he's always wanted.

It's the first time ever that Beau's had shoes brought from a

regular shop rather than something from disabled services, so quite

First pair of shoes for your seventh birthday, Beau. Today, Beau

will finally leave hospital, but first he has a very special

Five months after her operation, Abigail can take a few tentative

The past few months have seen Abigail and Beau undergo a life-

changing experience, and it's only It's a journey they're going to go

on together. Just the idea your child might be able to stand

independently or walk independently, I can't believe it, really. It's

going to be hard, but you'll do it, you will get through this. There

are many more children who can benefit from this. We've got to

move on from this being the first to this being the first of many.

Abigail and Beau are taking their first steps so hundreds more