Little Hearts Matter Lifeline

I loved being pregnant, but if I'm honest,

those nine months were also an anxious time.

Like most mothers, I worried constantly

that my children would be born healthy and strong.

I am so thankful that they were born without any complications

and are growing up fit and well.

But some parents are forced to confront their worst fears

even before their babies are born.

This is Samuel.

His mother Rachel was already a mum of two, so felt well prepared

for her routine ultrasound 20 weeks into the pregnancy.

The scan took quite a long time and they were asking me

to change position so they could get a better view of the heart

and I had a feeling because of the length of time that the scan

was taking that there was something wrong.

The scan revealed that only half of Samuel's heart had

developed properly - an incurable condition.

To be told that the baby that you're expecting...

..has a condition that is incompatible with life

was just an absolute bombshell to us.

We just were utterly devastated.

There's no cure for the condition.

So we had some very, very hard days, very lonely.

Having to make these decisions for a baby.

Unsure of what lay ahead,

Samuel's parents decided to continue the pregnancy.

He needed open-heart surgery immediately after he was born,

and recovered, but like all babies with this condition,

he would face repeated heart surgery before the age of five.

When you've been through that once and you know what it's like

to have to take your small child for more surgery again

is just heart-breaking as a parent.

And you look at him and he was growing normally.

And all the time in my mind I'm thinking poor little chap,

you've got to go through all that again.

Discovering that a child has a complicated heart condition is

extremely distressing for children and parents, leaving them

feeling isolated and fearful for what the future holds.

That's why I'm appealing to you on behalf of Little Hearts Matter.

They are a charity dedicated to supporting children

who are diagnosed with only a half a working heart.

18-year-old Hannah is one of the oldest people

living with this condition.

Despite major surgery throughout her childhood to make her heart

function better, she lives a life within limits.

The main symptoms of my condition are breathlessness,

concentration is quite a hard thing.

And the third thing is physical tiredness, which obviously,

stops everything, because walking up stairs is hard,

walking on flats and I just get quite tired physically, quickly,

which means that I need more time to get better.

Hannah had a loving family to support her,

but her disorder made her feel isolated.

It's affected my self confidence,

because I want to, obviously I've wanted to fit in.

Explaining my condition to my friends and things was always difficult.

It was stressful not being able to talk to someone and

not having people understand me and why I couldn't do certain things

and why I was lagging behind and stuff.

And as a surgical pioneer,

Hannah is forced to live under a cloud of uncertainty.

I've been thinking about my mortality quite a lot recently.

I don't dwell on it, because I know I will be very upset all the time,

but I have to think about it for my own sake.

However there is a charity dedicated to helping

people like Hannah.

Little Hearts Matter works to alleviate the fear, isolation

and lack of understanding felt by both children and families when

they are coming to terms with living with only half a working heart.

They provide vital support together with the latest medical information

whenever it's needed,

from diagnosis throughout treatment and into future life.

The charity run workshops that bring fellow sufferers together,

like this one led by Susie Hutchinson,

head of the charity and a former specialist cardiac nurse,

which is aimed at helping teenagers move into adulthood.

They frequently don't know enough about their heart condition.

because someone else has always led their hand before.

And that's no-one's fault, it's perfectly understandable.

But we are there running events like our youth workshops

where young people can start to explore in a bit of depth

what's wrong with them and what it means for them.

As well as educating, one of the key things that the charity

aims to do, is enable people to support and learn from each other.

It is incredibly easy to feel very isolated

if you have this sort of heart problem.

So we have big events where we link people up and they've gone away

and they've made friendships. And that's wonderful.

Little Hearts Matter has built a range of specialist

information services and support networks for children,

young people and their families, empowering everyone to cope

with the challenges of living with half a heart.

For Samuel's mum Rachel,

a Little Hearts Matter adviser was on the end of the line

when she was forced to make the hardest decision of her life.

She said they offer the surgery to these children

for a reason and that's because they can lead very good lives.

For the first time since the diagnosis

we actually felt that some good could come from it

and that the surgery was a viable option to put him forward for.

And the support she's found from other families the charity

have introduced her to has proved invaluable.

When you've got an operation looming, it's nice to be able to

get back in touch with these families and just again, just go through,

get things straight in your head, and also we can offer each other advice.

It's really only another family in your circumstance that can

really understand what it's like when you're going back into hospital

with your children.

Having lived through three heart operations,

Samuel is now doing well.

He's very vibrant, he's very intelligent, he's very funny,

and he just wants to fit in with everybody else.

We're just so proud of him and we wouldn't have him any other way.

Hannah has grown up with the support of the charity,

and the friends she's made via it have got her through the hard times.

We, like, we talk online, we're always like,

"Oh, I had a doctor's appointment today. How did it go?

"Did they say this? Did they do that?"

I know that there are people like me that I can talk to,

and I know that Little Hearts will be there if I need anything.

And more than anything, they have given her hope.

I left home in September to go to university.

I think I'm very well prepared for future life.

They've helped me so much to get to where I am today.

I wouldn't be who I am today without them, I don't think.

Up to 600 children are diagnosed with half a working heart each year.

And Little Hearts Matter wants to reach out to as many children,

young people and families as possible at their time of need,

and provide life-long support.

This is where you can help make a real difference.

Please go to the website, where you can donate.

If you don't have access to the internet then please call:

And if you can't get through then please, please, please keep trying.

You can also donate £10 by texting SUPPORT to 70121.

Texts cost £10 plus your standard network message charge

and the whole £10 goes to Little Hearts Matter.

Full terms and conditions can be found at bbc.co.uk/lifeline.

Telephone calls are free from most landlines.

Some networks and mobile operators will charge for these calls.

Or if you'd like to post a donation please make your cheque payable

to Little Hearts Matter and send it to Freepost, BBC Lifeline Appeal,

writing Little Hearts Matter on the back of the envelope.

And if you want the charity to claim Gift Aid on your donation,

please include an email or postal address

so that they can send you a Gift Aid form.

Thank you.

Subtitles by Red Bee Media Ltd