0:00:08 > 0:00:11It's 20 weeks into your pregnancy.
0:00:11 > 0:00:13You're excited to see your baby again.
0:00:13 > 0:00:15You may even be able to find out its sex.
0:00:15 > 0:00:19But you're also nervous - what if there's a problem?
0:00:19 > 0:00:21So you cast it out of your mind and think,
0:00:21 > 0:00:23no, everything's going to be fine.
0:00:23 > 0:00:27Except it's not - not for the 5,000 babies born every year in the UK
0:00:27 > 0:00:29with congenital heart disease,
0:00:29 > 0:00:32and less than half of those are detected before childbirth.
0:00:35 > 0:00:37We found out I was pregnant.
0:00:37 > 0:00:42It was a bit of a shock, it was a surprise, but it was a good one.
0:00:42 > 0:00:46And we found out we were having a boy, which was brilliant,
0:00:46 > 0:00:47a really happy time.
0:00:48 > 0:00:53In January 2015, Natasha gave birth to a baby boy and called him Tommy.
0:00:54 > 0:00:59The moment that Tommy was born was just overwhelming happiness,
0:00:59 > 0:01:02the relief that they're there and they're there safely.
0:01:02 > 0:01:04The way he looked and everything about him,
0:01:04 > 0:01:06he just seemed so perfect to us.
0:01:09 > 0:01:11The first thing that was apparent was his hands and feet
0:01:11 > 0:01:12were very cold.
0:01:14 > 0:01:18Tommy had shortness of breath, cold extremities and disinterest
0:01:18 > 0:01:22in feeding, which were all put down to him being a newborn.
0:01:22 > 0:01:26We noticed that his colour was so dark.
0:01:26 > 0:01:27His entire face, at that point,
0:01:27 > 0:01:32just seemed red but almost purple at the same time.
0:01:32 > 0:01:34Because of the speed of my delivery,
0:01:34 > 0:01:40they diagnosed his discolouration as bruising to the face and body.
0:01:41 > 0:01:46Then Tommy's colour started to change from purple to grey.
0:01:46 > 0:01:50So when Tommy was 11 days old, he was having almost like
0:01:50 > 0:01:53a screaming fit, which was very unlike him.
0:01:53 > 0:01:56We tried everything that we could think of to settle him,
0:01:56 > 0:02:01and he did sort of seem to calm down to almost a sob.
0:02:01 > 0:02:04We then decided that we'll take him to bed and see if
0:02:04 > 0:02:05he'll go to sleep.
0:02:06 > 0:02:08I had him laid on my chest.
0:02:08 > 0:02:11I then placed him between me and my partner to get up to
0:02:11 > 0:02:15get a drink and, as I got my drink and got back into bed,
0:02:15 > 0:02:17that's when we noticed that he wasn't breathing.
0:02:19 > 0:02:22Unfortunately, Tommy passed away that evening.
0:02:25 > 0:02:28A postmortem revealed that Tommy died of transposition of
0:02:28 > 0:02:31the great arteries - a condition that, if it had been detected,
0:02:31 > 0:02:35might have been able to be corrected in a procedure that
0:02:35 > 0:02:37has a 99% success rate.
0:02:40 > 0:02:41The charity Tiny Tickers
0:02:41 > 0:02:44is working tirelessly to make sure
0:02:44 > 0:02:46more babies survive with heart defects.
0:02:49 > 0:02:53My name is John Arnold and I am the chief executive of Tiny Tickers
0:02:53 > 0:02:56and, most importantly, I'm a dad of a heart patient as well.
0:02:57 > 0:02:58Tiny Tickers is a small,
0:02:58 > 0:03:02national charity that exists to try to improve
0:03:02 > 0:03:05the early detection of congenital heart disease
0:03:05 > 0:03:07to help save babies' lives.
0:03:09 > 0:03:13When my brother, Daniel, was 15, he collapsed and died in the garden.
0:03:13 > 0:03:15He had a congenital heart disease, but we had
0:03:15 > 0:03:19no warning signs at all that there was anything wrong with him.
0:03:19 > 0:03:20We'll never know whether it's a condition
0:03:20 > 0:03:23he was born with or something that developed in the few years
0:03:23 > 0:03:26before he died, and those questions go through the mind over
0:03:26 > 0:03:29the years and months afterwards - what if we'd known something,
0:03:29 > 0:03:32what if there was something that we could have done?
0:03:36 > 0:03:40Congenital heart disease is the most common birth defect.
0:03:40 > 0:03:44According to the NHS, as many as one in 111 babies have one.
0:03:44 > 0:03:48Alarmingly, around 1,000 newborns leave hospital each year
0:03:48 > 0:03:51without anyone ever knowing they have a problem.
0:03:52 > 0:03:56One of the ways that we're spotting these heart defects sooner is
0:03:56 > 0:03:58during the 20-week pregnancy scan.
0:03:59 > 0:04:01Our experts travel across the UK,
0:04:01 > 0:04:05training sonographers who are delivering 20-week pregnancy scans.
0:04:08 > 0:04:09The last 18 months alone,
0:04:09 > 0:04:14we've trained around 550 sonographers throughout the UK,
0:04:14 > 0:04:17and what our experts do is give them one-to-one support to give
0:04:17 > 0:04:22those sonographers the extra skills and confidence to spot
0:04:22 > 0:04:23potential defects.
0:04:23 > 0:04:28Each session costs £75, and that small amount of money can make
0:04:28 > 0:04:32a huge difference to a child with congenital heart disease.
0:04:32 > 0:04:35Jan Forster is one of the consultant cardiac sonographers
0:04:35 > 0:04:38delivering this training across the UK.
0:04:38 > 0:04:40During the 20-week scan,
0:04:40 > 0:04:43the heart is just one of the organs that they're trying to assess.
0:04:43 > 0:04:45What's really important is that the sonographers recognise
0:04:45 > 0:04:47what's normal so that then,
0:04:47 > 0:04:49if something looks a little bit different,
0:04:49 > 0:04:53they can try and ascertain whether or not there is a problem.
0:04:53 > 0:04:55But not all conditions can be seen during pregnancy,
0:04:55 > 0:04:59and spotting any heart defect is no easy task as,
0:04:59 > 0:05:03at the 20-week scan, the heart is about the size of a grape.
0:05:03 > 0:05:06The baby's now lying in a bit more of a difficult position,
0:05:06 > 0:05:07so this is the baby's spine here,
0:05:07 > 0:05:10so it just creates a bit of a shadow over the heart.
0:05:11 > 0:05:14'As a result of the training, we've had an increased number'
0:05:14 > 0:05:17of referrals from the departments that we've been out to visit,
0:05:17 > 0:05:20and some of those have been picking up very minor,
0:05:20 > 0:05:23quite subtle abnormalities that, I think,
0:05:23 > 0:05:25probably we wouldn't have seen before.
0:05:26 > 0:05:30But if a heart defect goes undetected during pregnancy scans,
0:05:30 > 0:05:33it's important that parents know what signs to look out for.
0:05:33 > 0:05:37Tiny Tickers have come up with Think Heart - a great way of
0:05:37 > 0:05:40telling new parents and health professionals five signs to
0:05:40 > 0:05:43look out for for an undetected heart condition,
0:05:43 > 0:05:46and it may just help save a baby's life.
0:05:46 > 0:05:49And to help parents and health professionals remember these,
0:05:49 > 0:05:53Tiny Tickers give out cards to new parents with these signs on.
0:05:53 > 0:05:57Just £10 would pay for 1,000 heart cards.
0:05:57 > 0:06:02If we had known of the Think Heart campaign before we had Tommy,
0:06:02 > 0:06:04or before Tommy passed away,
0:06:04 > 0:06:06then we maybe wouldn't be in this situation -
0:06:06 > 0:06:10we maybe could have had something to refer to when we were
0:06:10 > 0:06:13talking to health professionals, to say that my son had four of
0:06:13 > 0:06:16these five factors that are signs of
0:06:16 > 0:06:18congenital heart disease.
0:06:18 > 0:06:21Lisa and John were pregnant with their third child.
0:06:21 > 0:06:25All was going well until the 20-week scan.
0:06:25 > 0:06:29The sonographer at the time felt there was something not quite right.
0:06:29 > 0:06:35We were told that the baby had a major heart defect.
0:06:36 > 0:06:40In February 2014, Lisa went into labour and was rushed to hospital,
0:06:40 > 0:06:44where she gave birth to a beautiful 8lb 2oz boy.
0:06:44 > 0:06:48He was very sick when he was born. He was electric blue.
0:06:49 > 0:06:53Twice, we nearly lost him. He, um...
0:06:53 > 0:06:55Pulled the ventilator out on one occasion, didn't he?
0:06:55 > 0:06:58And his sats dropped so low at one point - sats being
0:06:58 > 0:07:00your oxygen level.
0:07:00 > 0:07:03We just trusted the doctors and the nurses, we just trusted
0:07:03 > 0:07:07whatever they said to us, we just put our baby's life in their hands.
0:07:08 > 0:07:11At just six days old, the baby had open heart surgery.
0:07:13 > 0:07:19It was just the longest seven hours of my life - absolutely awful.
0:07:21 > 0:07:24But we got the call to say that he was through the surgery.
0:07:26 > 0:07:31February 28th, 2014 - it was just the best day of my life.
0:07:32 > 0:07:35- You finally got to hold... - And I got to hold him, which...
0:07:35 > 0:07:38Was a day after the operation, wasn't it?
0:07:38 > 0:07:39Which was the first time...
0:07:39 > 0:07:41that was eight days after the baby had been born.
0:07:41 > 0:07:43And that was the day we named him,
0:07:43 > 0:07:46and we liked Rocco - he's a little fighter.
0:07:46 > 0:07:50Lisa and John feel their sonographer saved Rocco's life.
0:07:50 > 0:07:53'Without a doubt, we wouldn't have Rocco had we not had his condition
0:07:53 > 0:07:56'picked up by that sonographer.'
0:07:56 > 0:07:59- What did you say to the doctor? - Thank you for saving my life.
0:08:02 > 0:08:04Rocco's sonographer helped save his life,
0:08:04 > 0:08:08but not every baby is as lucky as that. But we can make a difference.
0:08:08 > 0:08:09With your money,
0:08:09 > 0:08:12Tiny Tickers can increase the rate of detection of congenital
0:08:12 > 0:08:15heart disease in newborn babies and increase their chances of survival.
0:08:15 > 0:08:18It's a tragedy that so many babies are born with undetected
0:08:18 > 0:08:20heart conditions.
0:08:20 > 0:08:22Please, please help us to combat that.
0:08:24 > 0:08:25To give by phone, call...
0:08:28 > 0:08:30Calls are free from mobiles and landlines.
0:08:30 > 0:08:35You can also donate £10 by texting SUPPORT to 70121.
0:08:35 > 0:08:37Texts cost £10 plus your standard network message charge,
0:08:37 > 0:08:40and the whole £10 goes to Tiny Tickers.
0:08:40 > 0:08:43For full terms and conditions or to make a donation online,
0:08:43 > 0:08:45visit the Lifeline website.
0:08:48 > 0:08:49Or, if you'd like to post a donation,
0:08:49 > 0:08:53please make your cheque payable to Tiny Tickers and send it to...
0:08:56 > 0:08:59..writing Tiny Tickers on the back of the envelope.
0:08:59 > 0:09:01Thank you.