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Health condition · Clinically reviewed

Congenital heart defects in children, detection, specialist care and lifelong follow-up.

The most common birth defect in the UK, affecting around 1 in 100 babies. Modern network care means most children now grow up and thrive.

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A radiographer guides a patient onto the bed of an advanced 3 Tesla MRI scanner in a London imaging suite

Why trust this guide

  • 01

    Clinically reviewed

    Written by our editorial team and reviewed by a registered UK clinician before publication.

  • 02

    Sourced from guidance

    Checked against NHS England specialised commissioning standards, NICE and paediatric cardiology society guidance.

  • 03

    Current for 2026

    Reflects modern UK practice, including newborn pulse oximetry screening and network care through Level 1 congenital cardiac centres.

Key facts

CHD in children, at a glance.

The essentials in plain English: how common, how it presents, how it is detected and where it is looked after in the UK.

  • How common

    Congenital heart defects affect around 1 percent of babies born in the UK, roughly 4,000 to 5,000 each year.

  • What they are

    Structural differences in the heart or great vessels present from birth, ranging from tiny holes to complex single-ventricle physiology.

  • Main groups

    Acyanotic (shunts and obstruction), cyanotic (mixing lesions) and complex or valvular defects, each with a distinct treatment path.

  • Detection

    Increasingly picked up on the 20-week anomaly scan and newborn pulse oximetry within 24 hours of birth.

  • Where care happens

    Ten designated Level 1 specialist congenital cardiac centres across the UK, with linked local networks.

  • Long-term outlook

    Most children now survive into adulthood and transition to specialist adult congenital heart disease (ACHD) services.

Why this guide matters

Network care changes outcomes.

CHD is common, varied and treatable. The three ideas below shape everything else on this page.

  • Detection is earlier than ever

    Antenatal anomaly scans and newborn pulse oximetry are catching critical CHD hours to weeks before symptoms would appear.

  • Specialist centres save lives

    Ten Level 1 UK centres deliver high-volume surgery and catheter care, with better outcomes than lower-volume units.

  • CHD is a lifelong condition

    Almost every child needs planned transition to adult congenital heart disease (ACHD) services, with counselling on pregnancy, exercise and infection risk.

How the diagnosis is made

From the 20-week scan to a clear plan.

The steps a UK paediatric or fetal cardiology team will normally follow, in order, so families know what to expect.

  1. 01

    Screening

    Antenatal anomaly scan

    The 20-week ultrasound looks at four-chamber view and outflow tracts. Suspected findings trigger a fetal echocardiogram at a specialist centre.

  2. 02

    Screening

    Newborn examination

    Colour, tone, femoral pulses, four-limb blood pressure, feeding and a careful listen for murmurs within the first 72 hours.

  3. 03

    Screening

    Pulse oximetry screening

    Pre-ductal and post-ductal SpO2 within 24 hours of birth. Increasingly used across UK maternity units to catch critical duct-dependent defects.

  4. 04

    Confirming

    ECG and chest X-ray

    Rhythm, hypertrophy patterns, heart size and lung vascularity. Fast and widely available in every district hospital.

  5. 05

    Confirming

    Echocardiogram, the gold standard

    Detailed anatomy, shunts, valve function and haemodynamics. The single most important test in paediatric cardiology.

  6. 06

    Confirming

    Cardiac MRI or CT

    For complex anatomy, great-vessel disease and surgical planning. Avoids ionising radiation where MRI is used.

  7. 07

    Planning

    Genetics and MDT review

    Chromosomal microarray, 22q11.2 testing and gene panels where indicated. Cases are discussed by specialist MDT before intervention.

Typical timeline: antenatal or newborn detection, then specialist review within hours to days.

Symptoms

What CHD looks like in babies and children.

Signs range from an incidental murmur in a well child to sudden collapse in a newborn. Any duct-dependent lesion becomes symptomatic when the arterial duct closes.

  • Cyanosis

    A blue tinge to lips, tongue or nail beds. Central cyanosis is never normal in a newborn and needs urgent review.

  • Tachypnoea and respiratory distress

    Fast breathing, recession, grunting or nasal flaring, sometimes mistaken for chest infection.

  • Poor feeding and sweating with feeds

    A common early sign of heart failure in infants. Feeds become slow, tiring and stop-start.

  • Failure to thrive

    Weight faltering, small centiles and poor growth despite adequate calories offered.

  • Heart murmur

    Often incidental in older children. Loud, harsh or associated with symptoms needs a paediatric cardiology opinion.

  • Tet spells

    Sudden deep cyanosis and distress in Tetralogy of Fallot. Older children may squat instinctively to relieve them.

  • Reduced exercise tolerance

    Getting tired or breathless quickly, dropping out of PE, or unable to keep up with peers.

  • Red flag, collapse or shock

    A newborn collapsing in the first weeks of life is a duct-dependent lesion until proved otherwise. Blue-light response.

Treatment

How CHD is treated in the UK.

Prostaglandin for duct-dependent lesions, medical support, catheter and surgical repair, and, for a small number, transplant. All delivered through specialist networks.

  • Prostaglandin E1 infusion

    Keeps the arterial duct open in duct-dependent lesions while the baby is stabilised and transferred to a specialist centre.

  • Diuretics and heart failure meds

    Furosemide, spironolactone, ACE inhibitors and, in selected children, beta-blockers to manage symptoms and support growth.

  • Interventional catheter

    Percutaneous device closure of ASD, VSD or PDA, balloon valvuloplasty, stenting and balloon atrial septostomy for TGA.

  • Primary surgical repair

    For VSD, AVSD, Tetralogy of Fallot, coarctation and arterial switch for TGA, often within the first months of life.

  • Staged palliation

    The three-stage Norwood, Glenn and Fontan pathway for hypoplastic left heart syndrome and single-ventricle physiology.

  • Valve repair or replacement

    Includes the Ross procedure for aortic valve disease in children, tailored to age and growth potential.

  • Hybrid procedures

    Combined surgical and catheter approaches for complex neonates, often reducing early bypass time.

  • Heart or heart-lung transplant

    For end-stage disease. UK paediatric transplant is centralised at Great Ormond Street and Newcastle Freeman.

Endocarditis and follow-up

Endocarditis prophylaxis is recommended for specific high-risk groups, including children with prosthetic valves or material, repaired defects with residual shunts and cyanotic CHD. Arrhythmias may need medication, ablation or a pacemaker. Support is available through the British Heart Foundation, Little Hearts Matter, Tiny Tickers and the Down’s Heart Group.

What this guide is based on

The sources behind every claim on this page.

UK national commissioning standards and specialist society guidance, current at the time of last review.

Key references

Guidelines and standards we relied on.

A quiet reminder

This guide is for information, not medical advice.

Your child’s paediatric cardiology team knows their anatomy and history and can tell you which parts apply. If in doubt, contact them directly.

  • NHS England. Specialised services for congenital heart disease, standards and service specifications.

  • NICE. Guidance on heart failure and congenital heart disease in children and young people.

  • British Congenital Cardiac Association (BCCA). Standards and position statements.

  • Public Health England / UK NSC. Newborn pulse oximetry evaluation and implementation guidance.

Red flags

When CHD needs urgent attention.

Most children with CHD are stable between appointments. These are the situations that are not, and where families should not wait.

  • Neonatal collapse

    A previously well baby who becomes grey, cold or shocked in the first weeks. Think duct-dependent lesion. Call 999.

  • Central cyanosis

    Blue lips or tongue in a newborn or infant is never normal, even if oxygen saturations look near-normal.

  • Absent or weak femoral pulses

    A classic sign of coarctation of the aorta. Needs urgent four-limb blood pressures and echocardiography.

  • Tet spell

    Deep sudden cyanosis with distress. Knee-to-chest position, oxygen, morphine and specialist input. Blue-light to hospital.

  • Acute heart failure

    Worsening breathlessness, poor feeding, sweating and hepatomegaly. Needs same-day paediatric assessment.

  • Arrhythmia

    Sustained fast or irregular heart rates, syncope or dizziness in a child with known CHD.

  • Endocarditis features

    Persistent unexplained fever in a child with prosthetic material, residual lesions or a cyanotic defect.

  • Thromboembolic events

    Especially after Fontan circulation. Sudden neurology, breathlessness or limb pain warrants urgent review.

  • Transplant rejection

    Fever, breathlessness or reduced exercise tolerance in a transplant recipient. Contact the transplant centre directly.

Living with it

A lifelong condition, with a clear pathway.

Four things that make the biggest day-to-day difference for families: knowing your specialist network, feeding and growth support, staying on top of infection prevention and planning the transition to adult services.

A quiet reminder

Small changes matter, tell the team early.

New breathlessness, colour change, poor feeding, unusual sweating or drops in exercise tolerance deserve a call to the paediatric cardiology team, not a wait-and-see.

  1. 01 Network

    Care through a specialist centre

    UK children with significant CHD are looked after by one of ten Level 1 centres, working with local paediatric teams closer to home.

  2. 02 Growth

    Feeding and growth support

    Small frequent feeds, nasogastric top-ups or fortified feeds are common before and after surgery. Dietitians are part of the team.

  3. 03 Infection

    Vaccinations and RSV prophylaxis

    Full UK schedule, plus flu and COVID boosters. Palivizumab or nirsevimab for eligible high-risk infants during RSV season.

  4. 04 Transition

    Moving to adult (ACHD) services

    Almost every child with CHD needs lifelong follow-up. Planned transition to specialist adult congenital services usually starts in mid-teens.

Frequently asked

Everything families ask about paediatric CHD.

Quick answers on types, causes, detection, specialist centres and lifelong follow-up.

  • How common are congenital heart defects in the UK?

    They are the most common group of birth defects, affecting around 1 percent of babies born in the UK, or roughly 4,000 to 5,000 children each year. Severity ranges from small self-resolving holes to complex defects needing early surgery.

  • What are the main types of congenital heart defect?

    They are usually grouped into acyanotic shunt lesions such as VSD, ASD, PDA and AVSD, obstructive lesions such as pulmonary stenosis, aortic stenosis, coarctation and hypoplastic left heart syndrome, cyanotic lesions such as Tetralogy of Fallot, TGA, tricuspid atresia, TAPVR, truncus arteriosus and Ebstein anomaly, plus complex single-ventricle physiology and valvular defects such as bicuspid aortic valve.

  • What causes congenital heart defects?

    Most are multifactorial and idiopathic. Recognised contributors include genetic conditions such as 22q11.2 deletion (DiGeorge), Down, Turner, Williams, Noonan, Alagille, Marfan, LEOPARD, CHARGE, Holt-Oram, Ehlers-Danlos and Loeys-Dietz syndromes, monogenic causes (JAG1, TBX5, NKX2-5, GATA4 and others) and teratogens including congenital rubella, maternal diabetes, phenylketonuria, alcohol, certain antiepileptics, lithium and retinoic acid.

  • How are congenital heart defects detected?

    Increasingly at the 20-week antenatal anomaly scan, followed by fetal echocardiography at a specialist centre. After birth, newborn examination, pulse oximetry screening within 24 hours, ECG, chest X-ray and echocardiography are the main tools. Cardiac MRI, CT and catheterisation are used for complex cases.

  • Which hospitals treat congenital heart disease in the UK?

    Ten designated Level 1 specialist surgical centres: Great Ormond Street and Evelina London, Bristol, Southampton, Birmingham, Alder Hey in Liverpool, Newcastle Freeman, Leeds, Glasgow and Belfast. They work as networks with local paediatric cardiology teams, and higher volume is linked to better outcomes.

  • Will my child need care as an adult?

    Almost always. Modern outcomes mean most children with CHD now grow up and need lifelong follow-up. Care is transitioned from paediatric cardiology to specialist adult congenital heart disease (ACHD) services, usually planned from the mid-teenage years, with counselling around exercise, pregnancy and endocarditis prevention.

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