0:00:11 > 0:00:14I loved being pregnant, but if I'm honest,
0:00:14 > 0:00:16those nine months were also an anxious time.
0:00:16 > 0:00:19Like most mothers, I worried constantly
0:00:19 > 0:00:22that my children would be born healthy and strong.
0:00:22 > 0:00:26I am so thankful that they were born without any complications
0:00:26 > 0:00:28and are growing up fit and well.
0:00:28 > 0:00:32But some parents are forced to confront their worst fears
0:00:32 > 0:00:34even before their babies are born.
0:00:34 > 0:00:36This is Samuel.
0:00:36 > 0:00:40His mother Rachel was already a mum of two, so felt well prepared
0:00:40 > 0:00:45for her routine ultrasound 20 weeks into the pregnancy.
0:00:45 > 0:00:49The scan took quite a long time and they were asking me
0:00:49 > 0:00:53to change position so they could get a better view of the heart
0:00:53 > 0:00:56and I had a feeling because of the length of time that the scan
0:00:56 > 0:00:59was taking that there was something wrong.
0:00:59 > 0:01:02The scan revealed that only half of Samuel's heart had
0:01:02 > 0:01:05developed properly - an incurable condition.
0:01:05 > 0:01:08To be told that the baby that you're expecting...
0:01:10 > 0:01:13..has a condition that is incompatible with life
0:01:13 > 0:01:17was just an absolute bombshell to us.
0:01:17 > 0:01:22We just were utterly devastated.
0:01:22 > 0:01:24There's no cure for the condition.
0:01:24 > 0:01:31So we had some very, very hard days, very lonely.
0:01:35 > 0:01:39Having to make these decisions for a baby.
0:01:39 > 0:01:41Unsure of what lay ahead,
0:01:41 > 0:01:44Samuel's parents decided to continue the pregnancy.
0:01:44 > 0:01:48He needed open-heart surgery immediately after he was born,
0:01:48 > 0:01:51and recovered, but like all babies with this condition,
0:01:51 > 0:01:55he would face repeated heart surgery before the age of five.
0:01:55 > 0:01:59When you've been through that once and you know what it's like
0:01:59 > 0:02:04to have to take your small child for more surgery again
0:02:04 > 0:02:06is just heart-breaking as a parent.
0:02:06 > 0:02:10And you look at him and he was growing normally.
0:02:10 > 0:02:14And all the time in my mind I'm thinking poor little chap,
0:02:14 > 0:02:16you've got to go through all that again.
0:02:19 > 0:02:22Discovering that a child has a complicated heart condition is
0:02:22 > 0:02:26extremely distressing for children and parents, leaving them
0:02:26 > 0:02:29feeling isolated and fearful for what the future holds.
0:02:29 > 0:02:33That's why I'm appealing to you on behalf of Little Hearts Matter.
0:02:33 > 0:02:37They are a charity dedicated to supporting children
0:02:37 > 0:02:40who are diagnosed with only a half a working heart.
0:02:40 > 0:02:4418-year-old Hannah is one of the oldest people
0:02:44 > 0:02:45living with this condition.
0:02:45 > 0:02:48Despite major surgery throughout her childhood to make her heart
0:02:48 > 0:02:52function better, she lives a life within limits.
0:02:52 > 0:02:56The main symptoms of my condition are breathlessness,
0:02:56 > 0:02:58concentration is quite a hard thing.
0:02:58 > 0:03:03And the third thing is physical tiredness, which obviously,
0:03:03 > 0:03:06stops everything, because walking up stairs is hard,
0:03:06 > 0:03:11walking on flats and I just get quite tired physically, quickly,
0:03:11 > 0:03:15which means that I need more time to get better.
0:03:15 > 0:03:18Hannah had a loving family to support her,
0:03:18 > 0:03:21but her disorder made her feel isolated.
0:03:21 > 0:03:23It's affected my self confidence,
0:03:23 > 0:03:26because I want to, obviously I've wanted to fit in.
0:03:26 > 0:03:30Explaining my condition to my friends and things was always difficult.
0:03:30 > 0:03:33It was stressful not being able to talk to someone and
0:03:33 > 0:03:38not having people understand me and why I couldn't do certain things
0:03:38 > 0:03:41and why I was lagging behind and stuff.
0:03:41 > 0:03:43And as a surgical pioneer,
0:03:43 > 0:03:47Hannah is forced to live under a cloud of uncertainty.
0:03:47 > 0:03:50I've been thinking about my mortality quite a lot recently.
0:03:50 > 0:03:55I don't dwell on it, because I know I will be very upset all the time,
0:03:55 > 0:03:59but I have to think about it for my own sake.
0:04:01 > 0:04:04However there is a charity dedicated to helping
0:04:04 > 0:04:06people like Hannah.
0:04:06 > 0:04:09Little Hearts Matter works to alleviate the fear, isolation
0:04:09 > 0:04:13and lack of understanding felt by both children and families when
0:04:13 > 0:04:17they are coming to terms with living with only half a working heart.
0:04:17 > 0:04:21They provide vital support together with the latest medical information
0:04:21 > 0:04:23whenever it's needed,
0:04:23 > 0:04:27from diagnosis throughout treatment and into future life.
0:04:27 > 0:04:31The charity run workshops that bring fellow sufferers together,
0:04:31 > 0:04:34like this one led by Susie Hutchinson,
0:04:34 > 0:04:38head of the charity and a former specialist cardiac nurse,
0:04:38 > 0:04:41which is aimed at helping teenagers move into adulthood.
0:04:41 > 0:04:45They frequently don't know enough about their heart condition.
0:04:45 > 0:04:47because someone else has always led their hand before.
0:04:47 > 0:04:50And that's no-one's fault, it's perfectly understandable.
0:04:50 > 0:04:54But we are there running events like our youth workshops
0:04:54 > 0:04:58where young people can start to explore in a bit of depth
0:04:58 > 0:05:01what's wrong with them and what it means for them.
0:05:01 > 0:05:05As well as educating, one of the key things that the charity
0:05:05 > 0:05:09aims to do, is enable people to support and learn from each other.
0:05:09 > 0:05:12It is incredibly easy to feel very isolated
0:05:12 > 0:05:15if you have this sort of heart problem.
0:05:15 > 0:05:18So we have big events where we link people up and they've gone away
0:05:18 > 0:05:21and they've made friendships. And that's wonderful.
0:05:21 > 0:05:25Little Hearts Matter has built a range of specialist
0:05:25 > 0:05:28information services and support networks for children,
0:05:28 > 0:05:32young people and their families, empowering everyone to cope
0:05:32 > 0:05:35with the challenges of living with half a heart.
0:05:35 > 0:05:36For Samuel's mum Rachel,
0:05:36 > 0:05:39a Little Hearts Matter adviser was on the end of the line
0:05:39 > 0:05:43when she was forced to make the hardest decision of her life.
0:05:43 > 0:05:47She said they offer the surgery to these children
0:05:47 > 0:05:52for a reason and that's because they can lead very good lives.
0:05:52 > 0:05:55For the first time since the diagnosis
0:05:55 > 0:05:59we actually felt that some good could come from it
0:05:59 > 0:06:04and that the surgery was a viable option to put him forward for.
0:06:04 > 0:06:08And the support she's found from other families the charity
0:06:08 > 0:06:10have introduced her to has proved invaluable.
0:06:10 > 0:06:14When you've got an operation looming, it's nice to be able to
0:06:14 > 0:06:18get back in touch with these families and just again, just go through,
0:06:18 > 0:06:22get things straight in your head, and also we can offer each other advice.
0:06:22 > 0:06:26It's really only another family in your circumstance that can
0:06:26 > 0:06:29really understand what it's like when you're going back into hospital
0:06:29 > 0:06:31with your children.
0:06:31 > 0:06:33Having lived through three heart operations,
0:06:33 > 0:06:35Samuel is now doing well.
0:06:35 > 0:06:39He's very vibrant, he's very intelligent, he's very funny,
0:06:39 > 0:06:43and he just wants to fit in with everybody else.
0:06:43 > 0:06:47We're just so proud of him and we wouldn't have him any other way.
0:06:47 > 0:06:50Hannah has grown up with the support of the charity,
0:06:50 > 0:06:55and the friends she's made via it have got her through the hard times.
0:06:55 > 0:06:58We, like, we talk online, we're always like,
0:06:58 > 0:07:00"Oh, I had a doctor's appointment today. How did it go?
0:07:00 > 0:07:03"Did they say this? Did they do that?"
0:07:03 > 0:07:06I know that there are people like me that I can talk to,
0:07:06 > 0:07:10and I know that Little Hearts will be there if I need anything.
0:07:10 > 0:07:13And more than anything, they have given her hope.
0:07:13 > 0:07:16I left home in September to go to university.
0:07:16 > 0:07:20I think I'm very well prepared for future life.
0:07:20 > 0:07:23They've helped me so much to get to where I am today.
0:07:23 > 0:07:27I wouldn't be who I am today without them, I don't think.
0:07:27 > 0:07:31Up to 600 children are diagnosed with half a working heart each year.
0:07:31 > 0:07:35And Little Hearts Matter wants to reach out to as many children,
0:07:35 > 0:07:38young people and families as possible at their time of need,
0:07:38 > 0:07:40and provide life-long support.
0:07:40 > 0:07:43This is where you can help make a real difference.
0:07:43 > 0:07:49Please go to the website, where you can donate.
0:07:49 > 0:07:55If you don't have access to the internet then please call:
0:07:55 > 0:08:00And if you can't get through then please, please, please keep trying.
0:08:00 > 0:08:05You can also donate £10 by texting SUPPORT to 70121.
0:08:05 > 0:08:09Texts cost £10 plus your standard network message charge
0:08:09 > 0:08:13and the whole £10 goes to Little Hearts Matter.
0:08:13 > 0:08:18Full terms and conditions can be found at bbc.co.uk/lifeline.
0:08:18 > 0:08:22Telephone calls are free from most landlines.
0:08:22 > 0:08:26Some networks and mobile operators will charge for these calls.
0:08:26 > 0:08:30Or if you'd like to post a donation please make your cheque payable
0:08:30 > 0:08:35to Little Hearts Matter and send it to Freepost, BBC Lifeline Appeal,
0:08:35 > 0:08:38writing Little Hearts Matter on the back of the envelope.
0:08:38 > 0:08:42And if you want the charity to claim Gift Aid on your donation,
0:08:42 > 0:08:45please include an email or postal address
0:08:45 > 0:08:48so that they can send you a Gift Aid form.
0:08:48 > 0:08:50Thank you.
0:08:50 > 0:08:53Subtitles by Red Bee Media Ltd