CHD Statistics and Research

• One in 125 babies is born with Congenital Heart Disease (CHD)
• More than 6,000 babies are born with major CHD each year in the UK
• In around 33% of cases, the CHD is detected prenatally
• Around 1,000 newborns leave UK hospitals each year with undetected CHD
• CHD is the most common congenital anomaly
• Up to 15% of CHD may remain undiagnosed at death
• More than 300 infants die every year in the UK from CHD
• CHD accounts for up to 12 % of all infant deaths – 1 in 10
• When detected, we know that many heart conditions can be treated – surgery survival rates are very high and 80% of babies born with a congenital heart defect survive past 16 years of age. The NHS has some of the world’s leading heart surgeons and doctors, and units around the UK are achieving remarkable things every day.

Experts agree on the benefits of early detection of CHD, which include:

• The long-term effects of heart failure may be avoided, including brain injury or death
• The baby’s birth can be managed – often in a specialist centre with the right medical experts at the birth
• The baby will receive treatment as soon as they need it
• If the baby needs open heart surgery, this can be planned for the best possible time – whereas if the baby is already very poorly when detected, surgery survival rates and outcomes may not be as good
• Medical emergencies and hospital transfers can be avoided
• Emergency patient transfers and cancelled operations can be avoided
• Parents can be given support and advice, and prepared for what is to come

Sources for the above statistics:

• Knowles and Hunter, Screening for Congenital Heart Defects, published July 2013 (research paper reviewing relevant studies on behalf of NHS National Screening Committee as part of pulse oximetry public consultation in 2014). This paper includes this summary: “Early detection in the fetal or newborn period is essential to provide anticipatory care at delivery or soon after birth and to prevent death before definitive management can be initiated, or the morbidity consequent on cardiovascular collapse. Cardiovascular collapse, characterised by severe hypoxaemia, shock and acidosis, can have significant long-term effects as a consequence of significant multi-organ insults, including hypoxic-ischaemic brain injury. Poor clinical status at the time of intervention increases interventional mortality and has an adverse effect on outcome. If life-threatening CHDs are not detected sufficiently early then cardiovascular collapse, neurological sequelae or death remain potential outcomes.”
• NICOR (National Institute for Cardiovascular Outcomes Research)
• The British Isles Network of Congenital Anomaly Registers (Binocar) report entitled, Congenital Anomaly Statistics 2012