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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.
Subtitles by Red Bee Media Ltd