ChronicleLive - Hand on heart

Another step closer

2009-05-03T21:00:00Z

So the big day continues to carve a path in our direction.

Following on from Charlie's angiogram over Easter, we're due to see the man at the business end of this whole process - Mr Hasan, the surgeon.

Mr Hasan has carried out all four of Charlie's operations, and number five will be the biggest yet.

]]> The aim will be to achieve normal blood flow through the heart, something which just isn't possible with the condition Charlie has.

One of the yardsticks used in monitoring youngsters with heart defects is oxygen saturation, or sats - a simple check on the amount of oxygen being carried in the blood.

For those of us lucky enough to have been born with a normal working heart, our sats should be around 100%.

Charlie's are usually anywhere between the 70-80% mark. He has a hole between the left and right pumping chambers, which means red, oxygen-rich blood and blue, oxygen-depleted blood - usually separated by a wall dividing the two sides of the heart - mix together.

The result is that blue blood is pumped out around his body along with the red.

Not that it holds him back too much.

Yes, he can get out of breath and tires more easily than other kids, but he still gives a pretty good account of himself, and can run you ragged all day long like any four-year-old.

Once his big op is out of the way, his sats should be up around the 100% mark and we'll start to notice a difference in his energy levels. Heaven help us!

The next one is the big one

2009-04-16T13:59:18Z

Everything went smoothly for Charlie on his little overnight Easter break in the Freeman Hospital.

The angiogram showed that his heart has grown well since he had last surgery three years ago.

Dr Wren, Charlie's cardiologist, said the results were better than he expected. "It looks nice," was the pleasing verdict.

It all sets the stage for the next phase of my son's adventure - the major open-heart procedure to correct the defects he was born with.

]]> That will be done some time in the next year, so we're moving on and looking forward to the day when the op is done.

Well, maybe not that exact day. Actually, given his past ups and downs in the operating theatre, it's a prospect that fills Charlie's mum and me with dread.

But speaking to Paddy, the community nurse on the Children's Heart Unit, was quite reassuring on this front.

She said that it's common for youngsters with heart conditions to experience severe difficulties when they have operations as babies and toddlers.

Then, when the time comes for the major corrective surgery - and they're a little bigger and stronger - many of them breeze through.

Fingers crossed that's the case with my son.

Ward 23 at the Freeman can be a busy place, but it was fairly quiet when we visited.

Little Ellen Walsh, the 11-month-old girl who had a heart transplant on the same day as her near-neighbour Patrick Skinner, had gone home a couple of days before we took Charlie in.

Two-year-old Patrick had already returned to his home in North Tyneside.

Best wishes to these two incredibly tough children and their families.

The hospital checklist

2009-04-07T16:00:00Z

We're all set for Charlie's trip into the Freeman.

It's been a while, so I thought I'd remind myself of the delights involved when your child goes into hospital.

Your normal existence is popped on hold as you enter the alternative reality of life on the ward.

Everyday routines disappear as the real world fades and your focus shifts ... on to trips to the WRVS shop and exciting walks up and down the corridor.

Making a cup of tea becomes an act of monumental significance.

And if you get visitors? Well, we're talking off the scale.

]]> I'll take the following following items with me:

Money for the car park: Hmmm, parking at hospitals. A controversial subject which I don't really want to get into here. Before setting off I'll grab a handful of cash for the machines - fifties, twenties, tens, whatever. And, as the meters also accept coins, I'll take some of those too.

Money for the Patientline TV: If there's any left out of the parking fund, Patientline is useful for accessing one of the most vital services on the children's ward - CBeebies.

Hospitals aren't the most exciting places, and boredom can easily set in, especially for young ones, but I'm hoping we'll be okay on this short visit.

The Freeman also has a play room (think Charlie's remembered as he keeps mentioning the toys) and an outside area for kids, so there are alternatives to Patientline (sorry, did I mention the service is provided by Patientline? That's four times now. Got to be worth at least a tenner's free credit).

One drawback for parents is that the bedside TVs are switched off at 9pm on children's wards. Or they were the last time I was in.

This was most inconvenient as the 2006 World Cup was on at the time. One night me and another dad rebelled and rigged up a battered old portable in order to watch what was left of the Argentina v Mexico game.

Okay, so our brave stance was taken with the full knowledge of the night staff, who found the telly for us, but it still felt like a rebellion.

Patientline (it's up to £20 now) is also very useful for phone calls to family and friends. And if anyone you know has more money than sense, they can call you as well.

Ready meals: Along with crisps and chocolate, the staple diet of the hospital-ward parent. A quick trip to M&S is in order before going in. Might as well get the posh stuff.

Once the kids are in bed, the rush for the microwave starts, so timing is crucial. It's best to get them down early, otherwise it could be a while before you tuck into that mouthwatering chicken arrabiata.

Alternatively, you can sometimes order a takeaway via the night staff. I remember being in the RVI with one of our boys a few years back and having a rather splendid curry delivered to the children's ward.

Food labels: For anything you put in the fridge - people will always pinch a drop of milk, regardless of the surroundings. Won't I?

Reading material: As there aren't many opportunities for a quiet read "on the outside", you may as well take advantage and stock up on newspapers, books and magazines.

Nice fluffy pillow from home: Er, don't know how this got in here. Must be a mistake.

Going back in again

2009-03-31T12:43:27Z

We're off into hospital over the Easter holidays - the first step on the road towards Charlie's next operation.

He is going in for an angiogram, an exploratory procedure which will give a complete picture of how his heart is working and developing.

The angiogram (also known as a heart catheter) will provide all the information needed to make a decision on what happens next for our boy.

We know he's going to need open heart surgery at some point. Perhaps it will be this year, or maybe a few years down the line.

It all depends on what the angiogram reveals.

]]> Charlie will be put to sleep and a thin tube, or catheter, will be inserted into a blood vessel in his groin and pushed up into his heart.

A dye is then released which flows through the heart's vessels and chambers, and shows up on a monitor like a moving X-ray.

For someone who has had four heart operations, it could be considered a relatively minor procedure. And it's not as if this will be his first angiogram.

There are still risks involved though - after all, we're talking about a long piece of tubing being manually weaved along small, delicate blood-filled pathways.

But the team at Newcastle's Freeman Hospital has a great reputation on this front.

Charlie's cardiologist has even said he'll try to give us some images of his angiogram for this blog!

The history of the procedure is interesting to say the least.

A German scientist by the name of Werner Forssman performed the first cardiac catheter 80 years ago . . . on himself.

Forssman thought his groundbreaking technique could be used to diagnose certain heart conditions, but his bosses said it was too dangerous.

So one day in 1929 he ignored them completely, inserted a catheter into a vein in his arm and slowly threaded it directly into his heart - a journey of just over a couple of feet.

Tube dangling from limb, he then walked to the X-ray department of the hospital near Berlin where he worked, took a photograph of his heart, and passed out.

His brave research earned him the sack, but a quarter of a century later he was rewarded more appropriately with the Nobel Prize.

My son has also shown plenty of bravery in his young life, but he won't be attracting any worldwide acclaim when he comes home from hospital.

However, he is guaranteed an extra large Easter egg.

The half a heart babies

2009-03-12T13:30:37Z

Across the wide-ranging spectrum of heart defects which babies come into this world with, one has the dubious honour of being "the worst".

Open heart surgery will be carried out in the first few days of life, with a further two major operations in store, usually before the baby has become a toddler.

On top of that, a heart transplant at some stage is a near-certainty, and life expectancy is limited - perhaps as young as the early 20s.

]]> The left side of the heart is where its real power is located, the engine room that pumps blood out to the body.

But with hypoplastic left heart syndrome (HLHS), the heart's left side is severely underdeveloped and unable to do its job.

Those with HLHS - around one in 5,000 babies - are effectively born with half a heart.

Of the 35 or so known congenital heart conditions, HLHS is considered the most serious.

So serious, in fact, that, unlike other cardiac conditions, no surgery can correct it.

Young mum Kerry Card, who grew up in Washington, Tyne & Wear, but now lives in South Yorkshire, is campaigning to raise awareness of HLHS.

Kerry's world changed forever when she was pregnant with her third child and went along for her 20-week scan.

Her excitement turned to terror and bewilderment when doctors said they suspected her unborn child had HLHS, a diagnosis that was confirmed a couple of weeks later.

Kerry's son Tristan, born in June 2007, has spent the first two years of his life in and out of the operating theatre.

He has had open heart surgery three times and will go on the heart transplant register when he is five.

In his mum's words, Tristan never stops fighting.

No wonder she calls him her little Rocky.

TO sign Kerry's petition calling for greater awareness of and research into HLHS, click here

What happens next?

2009-02-20T12:46:13Z

Charlie has had a nice long run without any surgery - nearly three years - but now his next operation is on the horizon.

At this stage things are still up in the air and we don't yet know when it will be.

We've been told it could be this year, next year, or perhaps even beyond then.

But we've reached the point where the doctors are considering their next move, and they need to take a closer look at his heart to help them make up their minds.

]]> Charlie will go into the Freeman Hospital some time in the spring for an angiogram, a procedure which will give the team a detailed picture of how his heart is functioning and developing.

Also referred to as a heart catheter, the angiogram involves putting the patient to sleep, then threading a fine tube up into the heart from a vein in the groin.

Once it's in place, a contrast dye is flushed through the tube, flowing through the heart, with the whole picture viewed on a monitor like a moving X-ray.

The doctors will base their plan for Charlie on what the angiogram reveals.

One possibility is that they decide to go ahead with a full repair of his congenital condition this year.

The thought of this is both scary and exciting.

The prospect of my son going through open heart surgery and the recovery that entails is not one I'd relish.

On the other hand, the idea of him having a normally working heart - or as close to it as possible - would make it all worthwhile.

Calling card

2009-01-03T23:45:00Z

It was around 11.30 one Sunday night. Charlie was burning up. Another soaring temperature meant another trip to the hospital.

The four of us got dressed, stumbled into the car and set off for the local children's ward.

This was the aftermath of Charlie's last operation, when his heart was in the grip of an infection that just would not go away.

When your child has cardiac surgery, those few hours they spend in the operating theatre are tough.

But it's what happens afterwards that usually causes the greatest worry.

]]> Charlie has certainly had his ups and downs after going under the knife. Everything from chest and urinary infections to a cardiac arrest (on Fathers' Day, but that's another story).

All par for the course for our young CHD warriors.

But here was a different kind of enemy, one that really had us scared.

Charlie started to have high temperatures soon after his fourth op. We could tell he just wasn't himself.

At first it was suspected he might have meningitis, but it turned out to be endocarditis, a potentially fatal bacteria that attacks the lining and valves of the heart.

By the time of our bleary-eyed visit to the hospital, we were getting used to the routine.

Charlie spiked a temperature, a blood sample was taken and sent for analysis and he was put on a course of antibiotics.

But he kept on being ill. Nothing was working, and no-one seemed to be getting to the bottom of it. We began to wonder if our son had something seriously wrong with him.

He wasn't eating, he was losing weight - even his hair was noticeably thinning out.

The medical people were also clearly concerned. He had all sorts of scans and tests, examining his internal organs, his bones, his brain.

There was nothing wrong with Charlie's sense of comedy timing though, as proved when he stayed wide awake after being sedated for a CT scan.

The procedure required complete stillness. But babies don't do complete stillness, so they had to think again.

It got to the point where Charlie's hands and feet had been pierced so often to take blood that the veins simply dried up.

We had to step in and call a halt as doctors tried unsuccessfully to obtain blood from our angry young man, who had become sick and tired of being constantly jabbed.

On one occasion when blood was needed, a doctor told me that his head was the best source.

I was uncomfortable to say the least, and Charlie's mum was distraught when I rang to tell her what was happening. Even one or two of the nurses on duty had their misgivings.

But there wasn't really a choice. So they shaved off a patch of hair and Charlie ended up looking like a mini-Rambo with his headband dressing and cannula sticking over the top.

Eventually, it was decided to deliver powerful drugs directly into his jugular vein.

Sounds gruesome, looks gruesome. A set of plastic tubes was surgically stitched into Charlie's neck - another scar for his collection - through which antibiotics were given by a nurse who came out to our home every day for 10 days.

He had gone from mini-Rambo to mini-Frankenstein's monster, with heavy wiring dangling down and pulling his head across to one side.

But it did the trick. The jugular's direct link to the heart gave the drugs a path to flow in and flush away the source of the infection.

Another course of antibiotics later, and Charlie finally got the all-clear. It had been five months since his operation.

Charlie might be having further surgery this year, and you naturally wonder whether this kind of thing could happen again.

But if endocarditis does decide on a rematch with my tough little lad, I can only see one winner.

Young at heart

2008-12-19T22:27:54Z

I can't help with the tidying-up because of my poorly heart.

The words of a five-year-old girl with a cardiac condition to her teachers.

They believed her. Of course they did. Who wouldn't? Bless her.

The only problem for this crafty youngster was that she didn't realise teachers sometimes talk to mums and dads.

]]> And her cunning plan was in tatters when when mum heard what her daughter had said, and informed the teachers that, actually, a certain pupil was taking them all for a little ride.

This story came from one of the Freeman Hospital's community cardiac nurses, who came out to our boys' nursery to chat to staff about their heart conditions.

She'd heard about the enterprising little girl on one of her school visits, which take place all over the north of England.

They are an invaluable way of raising awareness among school staff, and give them a better idea of how to react - and how not to react - in certain situations.

For example, if you saw a child going blue, your first instinct might be to grab a phone, dial 999 and scream for an ambulance.

But in the case of a youngster with a heart condition, it probably means they're a bit cold and you should get them warmed up.

The teachers and nursery staff at the boys' school were absorbed by their insight into the world of youngsters' heart conditions.

They were shown a full-size model of an adult heart and told how it should work, and what happens when things go wrong.

The basic message was to be aware, but not to treat our lads any differently.

And definitely not to let them go home without tidying up.

PS Congratulations to the PICU the Penguin fund for being adopted as the official charity of the 2009 Blaydon Race.

The charity is aiming to raise £50,000 for the Freeman Hospital's paediatric intensive care unit.

Gordon Gipson, the man behind the fund, is doing a great job keeping our young fighters in the public's hearts and minds, including his granddaughter Martha, who had a heart transplant at the Freeman last year.

The exposure from being linked to such a high-profile event should do a lot to propel his team closer to their ambitious target.

What becomes of the broken-hearted?

2008-11-26T10:50:00Z

If you were asked to imagine someone who was born with a heart defect, what would you see?

Maybe a picture similar to the one at the top of this page, which shows my little lad slogging it out in intensive care after heart surgery.

Or perhaps a youngster who had overcome their early setbacks and was now starting school.

You probably wouldn't come up with a 37-year-old teacher. But maybe it's time to think again.

Thanks to the advances of modern medicine, there is a growing population of adult survivors of childhood heart conditions.

These are the first waves of people born three or four decades ago who had heart surgery at a young age.

And now, as adults, many find they are facing an uncertain future.

]]> They don't know how long their hearts will hold out, or what kind of side-effects they might experience in years to come.

Then there's the daunting prospect of developing other heart problems on top of their childhood conditions.

One such survivor is Hazel Hunt, who spends large amounts of her time campaigning and raising awareness of congenital heart disease (CHD).

Hazel was born in 1971 with Transposition of the Great Arteries, a major structural defect in which the two main arteries leading out of the heart, the aorta and pulmonary artery, are plumbed in the wrong way round.

Instead of being connected to the left side of the heart, the aorta is attached to the right side, and the pulmonary artery is linked to the left side, not the right as it should be.

As a result, de-oxygenated blue blood is pumped out to the body, not the oxygen-rich red stuff that keeps us alive.

Hazel had two operations as a youngster, one as a baby and then an open heart procedure when she was two.

If you've read about a child having major heart surgery, you might think that once they have been operated on they are thus "cured".

But the legacy of these early days lasts a lifetime. Hazel's congenital condition still influences her life 35 years later, and she will always be monitored by heart specialists.

She started experiencing irregular heart rhythms in her early 30s, a direct result of her surgeries as a youngster.

One day she will need to be fitted with a pacemaker in order to keep her heart's electrical circuit under control.

The long-term effects of the kind of surgery Hazel had as a toddler can vary hugely - anything from arrhythmias of the type she experiences to the need for a heart transplant.

"There are no set rules for what can happen for people of my generation with this condition," says Hazel, who runs the CHD UK website.

"One person may need a heart transplant, another may need a valve transplant and another may only need a pacemaker.

"I do not have the pacemaker yet, but I will definitely need one in the future.

"After that, I do not know what problems will arise. Nor do the specialists."

Hazel describes herself as defensive and sensitive, which she puts down to the bullying she suffered at secondary school as a result of having to wear a heart monitor "the size of a brick".

But it wasn't only the ignorance of fellow pupils she had to contend with - one day a PE teacher pushed her too hard and didn't let her stop exercising when she knew she had had enough.

"I am too scared to push myself now when I am exercising," says Hazel, who grew up in Gloucestershire and now teaches English in Spain. She's also no stranger to the North East, with good friends in Newcastle.

"I have heard of teachers doing the same to other children with CHD.

"We look normal, like anyone in the street. Our condition is not staring people in the face, so they think we are making it up!"

Long before the internet was around, Hazel's parents had almost no information about her condition, and general awareness was even more limited than it is now.

Her mum and dad also had to move house to protect their daughter's health - the place where they lived was too cold for a youngster whose heart had to work overtime to pump blood out to fingers and toes when the temperature dipped.

"Even now I still suffer from the cold," says Hazel.

"I need to keep warm otherwise my heart will be working too hard just to keep my fingers, toes and lips from going blue."

Hazel has yet to make her mind up whether she wants children of her own.

She had always been told she wouldn't be able to have kids, but five years ago her specialist told her she could.

Despite the uncertain years ahead, Hazel remains positive.

"I have always lived day to day, having fun," she says.

"My motto is 'You have only one life, live life with no regrets and always do what you want to do'.

"I have had a second chance at life so I live it to the full and I am very spontaneous."

The fighting qualities often present in children with heart conditions are still in evidence.

"You think everyone is against you and that you have to fight a battle all the time.

"I wouldn't change anything in my life. I am who I am - defected heart included - it's made me who I am today.

"That is a strong, outgoing, stubborn, independent, thoughtful, caring person."

It shouldn't come as a surprise that children with heart conditions grow up, but maybe it's easy to forget they are out there, still fighting their daily battles.

FOR the Grown Up Congenital Heart Patients Association (GUCH) click here

FOR the CHD UK website, click here

One dad to another

2008-11-17T21:05:00Z

Sometimes we all need a little reminder to make us appreciate what we've got.

An incident which happened at the Freeman a couple of years ago never fails to put everything into perspective for me.

Making my way through the hospital one day, I was headed for the ward where Charlie was being treated for a particularly nasty heart infection.

Recognising the face coming along the corridor towards me, I smiled and stuck out my hand.

It was the father of a baby boy who had undergone heart surgery on the same day as Charlie a couple of months earlier.

]]> I asked him how his lad was doing.

I sensed the answer before I'd finished the question. By now I was up close, and could see it all in his face.

"Well, he ... didn't make it."

His boy had been just a few months old, and the aftermath of a complicated surgery had proved too much for a baby already weakened by previous operations.

The last time I had seen dad was in the parents' room near the paediatric intensive care unit on the day our boys were taken into the operating theatre.

A burly six-footer, he had nodded towards the PICU and said: "Not many things make my knees knock together, but walking through those doors is one of them."

That day, as we passed the time chatting, he still had some hope - albeit slim, as his son had been given only a 50/50 chance of survival.

I couldn't find the right words. What are the right words when it comes to the loss of a child? Sorry seemed so pathetically inadequate.

It felt like our two boys had gone into battle together, but only mine had made it safely back home.

And yet, despite his grief and red-raw emotional state, he was genuinely concerned about Charlie, who was in hospital after contracting endocarditis following his operation.

After a few minutes, we went our separate ways. Me to my son and his fight against a potentially fatal infection, he to continue preparations for his son's funeral.

Not all families who go through this experience get the chance of a happy ending to their stories.

If ever there was a moment which made me understand that, this was it.

Open your heart

2008-11-08T11:03:00Z

At some point in the future, maybe next year, Charlie will have open heart surgery to fix the major defects he was born with.

As his dad, I'm keen to know what that will actually involve.

It's a phrase that you see and hear quite often, but what exactly is open heart surgery?

It's a procedure that's successfully carried out countless times a year in operating theatres around the world.

But the thought of it still scares the living daylights out of me.

]]> Here's one reason why - before surgery can begin, the heart must be resting.

As in not beating.

In order to repair serious defects inside the heart, it's easier for the surgeon if that heart is (a) still, and (b) empty of blood.

So the heart is paralysed using a chemical solution, vessels are clamped off and the job of circulating blood around the body is taken over by a machine.

In effect, the heart is switched off for a while.

When the surgeon is at work, the heart-lung bypass machine does the job that the heart and lungs usually do - oxygenating and circulating the patient's blood.

Charlie has had four operations so far, but they have all been closed heart surgeries, on arteries connected to his heart but outside of it.

Those ops have helped him on his way, but the eventual goal is full repair, which means getting right inside his heart.

Here's another cause for concern - when the patient is on the bypass machine, the body takes something of a hammering.

The delicate balance between the internal organs can be easily disrupted. Blood can become infected. There are many potential complications.

This means the surgeon is racing against the clock - the sooner that youngster is off the bypass machine the better.

No pressure there, then. Perform major heart surgery, please, and by the way make it snappy.

The people who earn a living repairing children's hearts are some of the coolest customers you can imagine.

And that makes this dad a little less scared.

PICUP a Penguin

2008-11-01T07:15:43Z

Just a quick note to urge the people of the North East to support a very worthwhile cause.

The paediatric intensive care unit at Newcastle's Freeman Hospital is where youngsters from newborns to 16-year-olds are taken immediately after heart surgery.

The recovery period is fraught with danger, and it takes immense skill to tread a safe path through the post-op minefield.

Having spent many hours in there, I know the staff are second to none.

Gordon Gipson shares that opinion. His three-year-old granddaughter Martha had a heart transplant at the Freeman last year.

]]> But Gordon didn't just send a thank-you card. He set up a charity with the aim of raising £50,000 for the PICU.

He came up with the idea of PICU the Penguin, and is now almost halfway to his total.

On Monday, November 10, the People's Theatre in Heaton, Newcastle, is holding a charity concert in aid of the fund.

On the bill are local comedian Brendan Healy, acclaimed swing vocalist Jason Isaacs, Geordie choir The Caprians, The Bill star Libby Davison - an accomplished jazz singer - plus the Freeman's very own musical entertainers the Klack Band and Hilary Graham.

Radio Newcastle's Steve Drayton will compere the evening. Tickets are £20. Contact Gordon on (0191) 284 2603 or 07973 617 909, or the Theatre Box Office on (0191) 265 5020.

Is there an echo in here?

2008-10-28T14:34:14Z

My son Charlie's congenital heart condition was diagnosed on the second day of his life.

If only that was the case with every baby who came into the world with a heart defect.

Many parents take new babies home blissfully unaware that their little bundle of joy has a life-threatening cardiac condition.

You might imagine that any abnormality would be picked up during antenatal scans. Well, some are ... but more than 50% are missed, as Charlie's was.

Okay, but if something was missed at the antenatal scans, surely it would be discovered soon after the baby was born?

Er, not necessarily. In fact, sometimes a baby has to get really sick before anyone realises there's a problem with their heart.

]]> Last week the Chronicle carried a nice story about nine-year-old Jordan Brockbank, who has recovered from surgery to repair a hole in his heart,

He is now playing football for Wallsend Boys' Club and, like most lads his age, dreams of making it as a professional.

The piece included some telling quotes from Jordan's mum, Liz.

She said: "I noticed something was wrong with him when he was eight weeks old. He was cold, pale and forever crying.

"The doctor suggested he might just have colic. But call it mother's intuition, I just knew it was more serious."

Jordan was finally admitted to the Children's Heart Unit at the Freeman Hospital at four months old.

Liz added: "The doctors said if he'd been left without treatment any longer he would have died. His organs wouldn't get enough oxygen and would begin to fail."

Suppose Liz had not taken things any further after being told her son had colic. What if she had shrugged her shoulders and said "OK, you know best."

No-one would have blamed her if she had. After all, this was advice from a doctor. Must know what he's talking about, right?

Young Jordan wouldn't be lacing up his boots on a Saturday morning now had his mum not dug her heels in back then.

And that's how it happens in too many cases. A parent has to push things, not take no for an answer.

It can be months before a congenital heart condition is diagnosed, or even years. Then there are those who simply don't survive.

The sooner a heart condition is picked up the better. For the child, their family and the surgeons and cardiologists who have to make sense of it all and try to come up with a plan of action.

The British Heart Foundation estimates that around 4,600 children are born in Britain each year with a congenital heart condition (congenital meaning a defect that is present at birth).

Congenital heart disease is the number one birth defect. Yet we don't have any form of routine testing of newborns.

There's an online petition running at the moment, calling on the Prime Minister to introduce echocardiograms for all newborns as standard practice.

An echocardiogram is an ultrasound test similar to an antenatal scan that mums-to-be have.

It gives an accurate picture of the heart, and will highlight any structural defects such as holes, faulty valves, malformed pumping chambers and so on.

Of course, it all comes down to money. Echo machines are not cheap. And then you have to train people to use them.

Campaigners say the human cost is far higher. I wouldn't disagree.

If you think the detection of childhood heart conditions should be left to chance and the gut feeling of a detemined parent, fine. Don't sign the petition.

If, on the other hand, you believe modern technology should play a more important role, please click on the links below.

UK citizens only:

Every baby needs an echo petition

Global petition:

Worldwide baby echocardiogram petition

Electrical faults

2008-10-22T13:38:11Z

Anyone who reads the papers or watches the news will be familiar with the story.

An apparently healthy young man or woman dies suddenly due to an undetected heart condition.

It could be the young dad who collapses while playing football, or the teenage girl found dead in her bedroom.

]]> According to the Cardiac Risk in the Young charity, eight fit and healthy young people die each week in the UK from undiagnosed heart conditions.

These sudden unexplained deaths are often caused by a disturbance in the heart's electrical activity, which controls the rate at which the heart beats.

This electrical imbalance produces a dangerously fast heartbeat, or arrhythmia, which in turn stops the heart from pumping blood around the body.

Both my boys have one such condition. In their case, it's Long QT Syndrome, which affects around one in 7,000 of the UK population.

Of course, it's hugely worrying to discover that your children have something which can cause sudden death. Just writing that sentence gives me the shivers.

But the point is, we know that our boys have got it.

The great tragedy about electrical heart disorders is that many don't find out until it's too late.

A child may start to have unexplained fainting episodes in their pre-teenage years. If they are lucky, their condition is diagnosed and treatment begins.

But sometimes the worst-case scenario unfolds, and the victims are added to the nation's grim weekly roll call.

The frustrating thing is, detection and treatment is comparatively straightforward. It has been in the case of my boys, anyway.

A five-minute electrocardiogram (ECG) test can pick up any unusual electrical activity in the heart.

Once a diagnosis has been made, medication can then be prescribed, usually beta blockers. In some cases, a pacemaker will need to be fitted.

My two have a dose of beta blockers every morning, and that's enough to keep things under control.

CRY and other campaigners are pushing for wider testing and greater awareness of these conditions.

But as it stands, there are far too many young people going about their lives with no idea that they have a problem. Some will find out in time, some won't.

Eight people are collapsing and dying each week because they didn't know they had something wrong with their heart. Doesn't sound right to me.

One tough kid

2008-10-13T13:11:58Z

For someone who's had four heart operations - three of them before he was two months old - Charlie is in pretty good shape.

He whizzes around like your average three-year-old. If you didn't know it, you probably wouldn't guess he had a heart condition.

He's stubborn, feisty and resilient - characteristics that are said to be common among heart children.

As a good friend of mine would say, he's rock n roll. Even when he was a tiny baby, you could tell he had attitude. A real fighter, he took whatever was thrown at him and came back for more.

And he's had more than his fair share hurled in his direction.

]]> Charlie underwent his first operation at the back end of April 2005, aged 33 days.

He had to be transferred from Sunderland Royal Infirmary's special care baby unit - his home for the first five weeks of his life - to the Freeman Hospital in Newcastle, where surgery would take place.

As the paramedics wheeled my son to the waiting ambulance that Saturday morning, two things occurred to me:

1 It was Charlie's first time out of doors;

2 He knew nothing about it.

In preparation for surgery, Charlie was already sedated, his breathing controlled by a ventilator. The incubator housing him was secured in place and then he was gone.

They even held up the traffic on either side of the Tyne Tunnel for our little VIP as he was blue-lighted to his destination.

That afternoon, they cut his chest open for the first time. The long hours of waiting are as bad as you might imagine. Then the phone call came to say it was over, everything had gone well and we could go and see our boy.

The situation was complicated by the fact that Charlie's twin brother George was due to be discharged from the special care unit the following day. We were taking one of our boys home. Joy amid the chaos.

So there they were. Two baby brothers. One ready to start his new life, the other just out of an operating theatre. Their mum and dad's emotions going haywire.

But Charlie decided that this particular weekend just wasn't crazy enough for his liking.

On the day we took his brother home, and less than 24 hours after his first heart operation, he needed another little trip to the operating theatre.

And one more for good measure ten days after that. (I'll fill in the gaps another time).

He was a scrap of a baby. Scrawny, said the anaesthesiologist. But he cleared his first hurdle, and lived to fight another day.

He dealt with his subsequent battles inside the walls of hospitals and beyond in the same determined way.

Like I said, one tough kid.