Child deaths from heart defects plummets – thanks to the NHS

Progress in cardiac care creates the first generation to enjoy high survival rates

Fixing a child’s heart is one the most intricate operations that the NHS performs. Surgeons who do it must operate on tiny babies whose hearts are hardly bigger than walnuts and whose veins are little more than a hair’s breadth across.

But despite the intricacy, it is something that surgeons, and in particular NHS surgeons, have quietly been getting better at for decades.

Today the British Heart Foundation has released figures that reveal a huge 83 per cent drop in the number of children dying from congenital heart disease – birth defects of the heart – over the last three decades.

Progress in diagnosis, intervention and post-op care has created a generation, now in their twenties and thirties, who are the first to have enjoyed high survival rates for major heart defects. There are so many survivors that a new speciality – adult congenital heart monitoring – has emerged to treat them in later life.

 “We are now getting generations of young people going into adulthood that wouldn’t have done 20 or 30 years ago,” Anne Keatley Clarke, chief executive of Children’s Heart Federation, told The Independent. “Children who had very complicated heart conditions are now going into their twenties or thirties, looking forward to leading a normal life. Thirty years ago parents were saying I just want my child to live. Now parents are saying, what’s their quality of life going to be like?”

Around eight in every 1,000 babies is born with a heart defect – 12 every day in the UK. The latest figures illustrate children’s vastly improved chances. Between 1979 and 1983, more than 5,200 children lost their lives to congenital heart disease. Between 2004 and 2008, that figure had plummeted to 893 and experts say it’s still falling.

“It was once the case that patients with complex congenital heart disease would not be expected to survive,” said Professor Andrew Taylor, a leading cardiologist at Great Ormond Street Hospital (GOSH). “Nowadays it’s completely the reverse. In our own institution we’re looking at two to three per cent surgical mortality rates.”

Progress in recent decades has been in four main areas: improved understanding of the anatomy of a child’s heart, pioneered by the cardiologist Robert Anderson in the 1980s; better imaging, including the development of echocardiography and the cardiac MRI; new, often highly-complex surgical techniques; and the ever more sophisticated use of cardiac catheters, tubes which are fed into blood vessels in the arm or groin and can now be used to perform repairs – removing the need for risky open heart surgery.

In the area of diagnosis, imaging of children’s hearts is now so sophisticated that a heart lesion can be detected in a 20-week old foetus in the womb, with a heart the size of a grape, beating 120 times per minute.

NHS cardiac surgery for children is provided at 10 hospitals around the country. Despite the progress that was being made across the speciality at the time, child heart surgery was at the centre of one of the most notorious care failures of recent years – the 1990s Bristol heart scandal, in which scores of babies died because of substandard care at the Bristol Royal Infirmary.

The case galvanised even more rapid improvement across the sector, placing the impetus on surgeons to share their expertise across hospitals to ensure the NHS always provided the cutting edge. The UK came to be seen by European cardiologists as the forefront of child heart surgery. With only 10 specialist hospitals, surgeons at each unit would see more patients than they would in the smaller cardiac units in many European countries.

Alessandro Giardini, a consultant paediatric cardiologist at Great Ormond Street said the UK was “the place where you really wanted to be as a paediatric cardiologist” when he arrived from Italy six years ago.

Even in that time great leaps have been made, he said. “Areas that had only acceptable survival rates – like hydroplastic left heart syndrome, when the child is born with only one pumping chamber – survival has improved in eight years from 60 to more than 85 per cent. For children with serious heart muscle problems, we have a range of technological tools that we did not have a few years ago. They are also improving survival rates. Very rarely now do we have to say to a parent: there is nothing we can do.”

Researchers are now looking at the use of stem cells to create heart components that would grow as the patient grows, removing the need for follow-up operations. Scientists are also investigating the molecular causes of heart defects in the womb, in the hope of one day being able to prevent, rather than cure, child heart disease.

Controversy still exists over the number of specialist heart units in the UK. Most experts now agree that better care can be provided by fewer, better-staffed, better-equipped and more specialist centres, but in June the Health Secretary Jeremy Hunt rejected plans to reduce the number of hospitals providing child heart surgery from 10 to seven, and sent the review panel back the drawing board.

Professor Peter Weissburg at British Heart Foundation said policymakers had to make a decision soon. “We don’t want lots of mediocre centres, we want fewer really excellent centres. Our concern is the process has foundered somewhat. The longer it takes to come to a rational decision, the worse it is for children with congenital heart disease as centres can’t plan for the future, until they know what their future is.”

To find out more about what British Heart Foundation is doing to help congenital heart defects click here

PROMOTED VIDEO
Life and Style
ebookNow available in paperback
ebooks
ebookPart of The Independent’s new eBook series The Great Composers
Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating
    and  

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    Tradewind Recruitment: KS2 Teacher

    Negotiable: Tradewind Recruitment: My client is a two form entry primary schoo...

    Tradewind Recruitment: English Teacher

    Negotiable: Tradewind Recruitment: My client is an excellent, large partially ...

    Tradewind Recruitment: Science Teacher

    £90 - £140 per day: Tradewind Recruitment: I am currently working in partnersh...

    Tradewind Recruitment: Year 3 Primary Teacher

    £100 - £150 per day: Tradewind Recruitment: Year 3 Teacher Birmingham Jan 2015...

    Day In a Page

    Isis hostage crisis: The prisoner swap has only one purpose for the militants - recognition its Islamic State exists and that foreign nations acknowledge its power

    Isis hostage crisis

    The prisoner swap has only one purpose for the militants - recognition its Islamic State exists and that foreign nations acknowledge its power, says Robert Fisk
    Missing salvage expert who found $50m of sunken treasure before disappearing, tracked down at last

    The runaway buccaneers and the ship full of gold

    Salvage expert Tommy Thompson found sunken treasure worth millions. Then he vanished... until now
    Homeless Veterans appeal: ‘If you’re hard on the world you are hard on yourself’

    Homeless Veterans appeal: ‘If you’re hard on the world you are hard on yourself’

    Maverick artist Grayson Perry backs our campaign
    Assisted Dying Bill: I want to be able to decide about my own death - I want to have control of my life

    Assisted Dying Bill: 'I want control of my life'

    This week the Assisted Dying Bill is debated in the Lords. Virginia Ironside, who has already made plans for her own self-deliverance, argues that it's time we allowed people a humane, compassionate death
    Move over, kale - cabbage is the new rising star

    Cabbage is king again

    Sophie Morris banishes thoughts of soggy school dinners and turns over a new leaf
    11 best winter skin treats

    Give your moisturiser a helping hand: 11 best winter skin treats

    Get an extra boost of nourishment from one of these hard-working products
    Paul Scholes column: The more Jose Mourinho attempts to influence match officials, the more they are likely to ignore him

    Paul Scholes column

    The more Jose Mourinho attempts to influence match officials, the more they are likely to ignore him
    Frank Warren column: No cigar, but pots of money: here come the Cubans

    Frank Warren's Ringside

    No cigar, but pots of money: here come the Cubans
    Isis hostage crisis: Militant group stands strong as its numerous enemies fail to find a common plan to defeat it

    Isis stands strong as its numerous enemies fail to find a common plan to defeat it

    The jihadis are being squeezed militarily and economically, but there is no sign of an implosion, says Patrick Cockburn
    Virtual reality thrusts viewers into the frontline of global events - and puts film-goers at the heart of the action

    Virtual reality: Seeing is believing

    Virtual reality thrusts viewers into the frontline of global events - and puts film-goers at the heart of the action
    Homeless Veterans appeal: MP says Coalition ‘not doing enough’

    Homeless Veterans appeal

    MP says Coalition ‘not doing enough’ to help
    Larry David, Steve Coogan and other comedians share stories of depression in new documentary

    Comedians share stories of depression

    The director of the new documentary, Kevin Pollak, tells Jessica Barrett how he got them to talk
    Has The Archers lost the plot with it's spicy storylines?

    Has The Archers lost the plot?

    A growing number of listeners are voicing their discontent over the rural soap's spicy storylines; so loudly that even the BBC's director-general seems worried, says Simon Kelner
    English Heritage adds 14 post-war office buildings to its protected lists

    14 office buildings added to protected lists

    Christopher Beanland explores the underrated appeal of these palaces of pen-pushing
    Human skull discovery in Israel proves humans lived side-by-side with Neanderthals

    Human skull discovery in Israel proves humans lived side-by-side with Neanderthals

    Scientists unearthed the cranial fragments from Manot Cave in West Galilee