CHILDHOOD LIVER TRANSPLANT
EPISODE 1: THE TRANSPLANT

Gemma was born with biliary atresia.
She was diagnosed at eight weeks.

Had a kasai procedure operation
at nine weeks, which was unsuccessful.

And, at that time, we were told

that there really wasn't anything else
in this country

and we'd be lucky if we still had her
when she was two.

I was born with

auto-immune chronic active hepatitis,
apparently.

So that was the basic reason
behind my transplant.

Well, when I was born I was diagnosed
with a condition called biliary atresia.

Biliary atresia means the obliteration,

it's quite dramatic,
or blockage of the bile ducts.

And basically, I needed a transplant.

They gave me a transplant, they managed
to successfully find me a liver,

but the problem with that liver

is that there were blockages around the
blood vessels which went into the liver.

And that basically suffocated
my second liver.

So I needed another transplant,
which is the one I've had ever since.

So I've had two transplants.

I was diagnosed with a form of
cirrhosis of the liver when I was two.

I went on to have my first liver
transplant in '94 when I was eight.

Unfortunately, I believe
I contracted auto-immune hepatitis,

so I then went on to have
a second liver transplant in 1998.

I was born with a metabolic disease.

Which was picked up by chance by my GP

in a routine check-up
when I was two years old.

He felt that my liver
was slightly enlarged,

so he sent me to King's College Hospital
just to be safe.

After various tests, they actually found
that I had cirrhosis of the liver.

They didn't know why I was born with it,
I just was.

And, worryingly,
it was becoming cancerous,

so I was put on the transplant list.

I was six months old
for my first transplant.

And seven months and one day old
for my second transplant.

She had the transplant in Pittsburgh.

When we first went over,
she had to be evaluated,

so she spent three days in the hospital
having lots of different checks.

We waited five months for a donor.

I didn't have jaundice.

I was still very energetic.

So it didn't actually look like
I was really ill.

When I actually had the transplant,
I was eight years old.

I remember little patches.

I actually remember
sitting in the ward in London

and food being nearly ready
in the evening,

and just as I was waiting for that,

a doctor coming over to talk to myself
and my mum.

I remember that quite well
and him essentially saying,

"Frank, we thought we'd basically
try and make you well again

and give you a new liver,"
or something in those terms.

I remember it partly well
because it seemed like no big deal.

At that age,
you don't really have a concept

of quite how significant that would be.

And I remember thinking,
"Yes, fine, that sounds good."

"When's dinner?
What's on TV this evening?"

And really it just being...

..of nothing of huge concern to me
at that age.

No doubt it was much more so
for my parents.

Apparently, when I had had
an awful lot of morphine, I think,

I spent the whole night ripping posters
down off the hospital walls.

I've watched videos from when I was
younger, seen newspaper clippings.

Kind of heard from various family
members how it was for them, really,

but, for me, I don't remember anything.

I'm kind of pleased
that I don't, actually.

Gemma was 23 months
when she had the first one,

and the second one
was nine months later.

She was very young.

She was in hospital
for two months after the transplant.

Up and down with rejection
and lots of different problems.

But she was released after two months
and we came home two months later.

But when we came home,
she was in chronic rejection.

And they just hoped that
that may subside,

or may have kept going
for several years.

But actually it just kept going
for another few months,

so we had to go back to the States
for a second transplant.

My mum always prepared me
that I'd need another transplant.

She knew that the first one
didn't really take.

So it was kind of an unwritten...

an unsaid rule, I guess,
that I would need another one.

I remember being called into
the doctor's office

and them telling me
I'd need a transplant.

They were going to put me on the list.
I didn't really know what to say.

They asked me what I was worried about.

The only concern I had was
I didn't want staples

because they really hurt
to have them out.

I think, what was the other thing?
It was something to do with cannulas.

I just hate cannulas. I think it was...

Please, can they put me under
with the gas

and then do the cannula
to completely knock me out.

That was the only worry.
At that time I didn't think about it.

Then me and my mum left the office
and had a cry and rung my dad

and then I guess it really hit.

Being that age,
you're so naive to it all.

It didn't really feel as big, I suppose.

FOR MORE INFORMATION AND TO SEE
THE REST OF THE SERIES VISIT:

www.nhs.uk/childhoodlivertransplant