Tiny Tickers Lifeline

It's 20 weeks into your pregnancy.

You're excited to see your baby again.

You may even be able to find out its sex.

But you're also nervous - what if there's a problem?

So you cast it out of your mind and think,

no, everything's going to be fine.

Except it's not - not for the 5,000 babies born every year in the UK

with congenital heart disease,

and less than half of those are detected before childbirth.

We found out I was pregnant.

It was a bit of a shock, it was a surprise, but it was a good one.

And we found out we were having a boy, which was brilliant,

a really happy time.

In January 2015, Natasha gave birth to a baby boy and called him Tommy.

The moment that Tommy was born was just overwhelming happiness,

the relief that they're there and they're there safely.

The way he looked and everything about him,

he just seemed so perfect to us.

The first thing that was apparent was his hands and feet

were very cold.

Tommy had shortness of breath, cold extremities and disinterest

in feeding, which were all put down to him being a newborn.

We noticed that his colour was so dark.

His entire face, at that point,

just seemed red but almost purple at the same time.

Because of the speed of my delivery,

they diagnosed his discolouration as bruising to the face and body.

Then Tommy's colour started to change from purple to grey.

So when Tommy was 11 days old, he was having almost like

a screaming fit, which was very unlike him.

We tried everything that we could think of to settle him,

and he did sort of seem to calm down to almost a sob.

We then decided that we'll take him to bed and see if

he'll go to sleep.

I had him laid on my chest.

I then placed him between me and my partner to get up to

get a drink and, as I got my drink and got back into bed,

that's when we noticed that he wasn't breathing.

Unfortunately, Tommy passed away that evening.

A postmortem revealed that Tommy died of transposition of

the great arteries - a condition that, if it had been detected,

might have been able to be corrected in a procedure that

has a 99% success rate.

The charity Tiny Tickers

is working tirelessly to make sure

more babies survive with heart defects.

My name is John Arnold and I am the chief executive of Tiny Tickers

and, most importantly, I'm a dad of a heart patient as well.

Tiny Tickers is a small,

national charity that exists to try to improve

the early detection of congenital heart disease

to help save babies' lives.

When my brother, Daniel, was 15, he collapsed and died in the garden.

He had a congenital heart disease, but we had

no warning signs at all that there was anything wrong with him.

We'll never know whether it's a condition

he was born with or something that developed in the few years

before he died, and those questions go through the mind over

the years and months afterwards - what if we'd known something,

what if there was something that we could have done?

Congenital heart disease is the most common birth defect.

According to the NHS, as many as one in 111 babies have one.

Alarmingly, around 1,000 newborns leave hospital each year

without anyone ever knowing they have a problem.

One of the ways that we're spotting these heart defects sooner is

during the 20-week pregnancy scan.

Our experts travel across the UK,

training sonographers who are delivering 20-week pregnancy scans.

The last 18 months alone,

we've trained around 550 sonographers throughout the UK,

and what our experts do is give them one-to-one support to give

those sonographers the extra skills and confidence to spot

potential defects.

Each session costs £75, and that small amount of money can make

a huge difference to a child with congenital heart disease.

Jan Forster is one of the consultant cardiac sonographers

delivering this training across the UK.

During the 20-week scan,

the heart is just one of the organs that they're trying to assess.

What's really important is that the sonographers recognise

what's normal so that then,

if something looks a little bit different,

they can try and ascertain whether or not there is a problem.

But not all conditions can be seen during pregnancy,

and spotting any heart defect is no easy task as,

at the 20-week scan, the heart is about the size of a grape.

The baby's now lying in a bit more of a difficult position,

so this is the baby's spine here,

so it just creates a bit of a shadow over the heart.

'As a result of the training, we've had an increased number'

of referrals from the departments that we've been out to visit,

and some of those have been picking up very minor,

quite subtle abnormalities that, I think,

probably we wouldn't have seen before.

But if a heart defect goes undetected during pregnancy scans,

it's important that parents know what signs to look out for.

Tiny Tickers have come up with Think Heart - a great way of

telling new parents and health professionals five signs to

look out for for an undetected heart condition,

and it may just help save a baby's life.

And to help parents and health professionals remember these,

Tiny Tickers give out cards to new parents with these signs on.

Just £10 would pay for 1,000 heart cards.

If we had known of the Think Heart campaign before we had Tommy,

or before Tommy passed away,

then we maybe wouldn't be in this situation -

we maybe could have had something to refer to when we were

talking to health professionals, to say that my son had four of

these five factors that are signs of

congenital heart disease.

Lisa and John were pregnant with their third child.

All was going well until the 20-week scan.

The sonographer at the time felt there was something not quite right.

We were told that the baby had a major heart defect.

In February 2014, Lisa went into labour and was rushed to hospital,

where she gave birth to a beautiful 8lb 2oz boy.

He was very sick when he was born. He was electric blue.

Twice, we nearly lost him. He, um...

Pulled the ventilator out on one occasion, didn't he?

And his sats dropped so low at one point - sats being

your oxygen level.

We just trusted the doctors and the nurses, we just trusted

whatever they said to us, we just put our baby's life in their hands.

At just six days old, the baby had open heart surgery.

It was just the longest seven hours of my life - absolutely awful.

But we got the call to say that he was through the surgery.

February 28th, 2014 - it was just the best day of my life.

-You finally got to hold...

-And I got to hold him, which...

Was a day after the operation, wasn't it?

Which was the first time...

that was eight days after the baby had been born.

And that was the day we named him,

and we liked Rocco - he's a little fighter.

Lisa and John feel their sonographer saved Rocco's life.

'Without a doubt, we wouldn't have Rocco had we not had his condition

'picked up by that sonographer.'

-What did you say to the doctor?

-Thank you for saving my life.

Rocco's sonographer helped save his life,

but not every baby is as lucky as that. But we can make a difference.

With your money,

Tiny Tickers can increase the rate of detection of congenital

heart disease in newborn babies and increase their chances of survival.

It's a tragedy that so many babies are born with undetected

heart conditions.

Please, please help us to combat that.

To give by phone, call...

Calls are free from mobiles and landlines.

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 Tiny Tickers.

For full terms and conditions or to make a donation online,

visit the Lifeline website.

Or, if you'd like to post a donation,

please make your cheque payable to Tiny Tickers and send it to...

..writing Tiny Tickers on the back of the envelope.

Thank you.