Skip to main content

Health condition · Clinically reviewed

Congenital diaphragmatic hernia, from antenatal diagnosis to specialist surgical care.

A rare but serious defect of the diaphragm that shapes fetal lung growth. Modern UK practice, gentle ventilation, ECMO and centralised surgery have transformed the outlook.

Jump to treatment
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 CDH EURO Consortium, BAPS, RCOG and peer-reviewed sources you can see at the end.

  • 03

    Current for 2026

    Reflects modern UK practice including fetal endoluminal tracheal occlusion (FETO) and specialist neonatal surgical centres.

Key facts

CDH at a glance.

The essentials in plain English: what it is, the main types, what drives outcome, and where the best specialist care is delivered in the UK.

  • What it is

    A defect in the diaphragm that lets abdominal organs herniate into the chest, restricting fetal lung growth and driving pulmonary hypertension after birth.

  • How common

    Around 1 in 2,500 to 4,000 live births in the UK, with rising antenatal detection at the 20-week anomaly scan.

  • Types by location

    Bochdalek (posterolateral, ~85%, usually left-sided), Morgagni (anterior retrosternal, ~5 to 10%, often mild or adult), and central, hiatal or eventration variants.

  • Associations

    Chromosomal in around 30% (trisomy 18, 13, 21, 22q11, Fryns, Cornelia de Lange, Pallister-Killian) and other anomalies in around 40%, most often cardiac.

  • The main problem

    Not the hole itself but the pulmonary hypoplasia and pulmonary hypertension it causes, which drive the neonatal course.

  • Where to be born

    Planned delivery at a specialist UK neonatal surgical centre gives the best outcomes, with survival now around 70 to 90% at expert units.

Why this guide matters

A specialist condition, best cared for in specialist hands.

CDH is uncommon but high-stakes. The three points below shape how families and teams navigate the antenatal and neonatal journey.

  • Antenatal diagnosis changes everything

    Picking up CDH on the anomaly scan allows planning, counselling and delivery at a specialist surgical centre, all of which improve outcomes.

  • It is a lung problem, not just a hole

    Pulmonary hypoplasia and pulmonary hypertension drive the neonatal course. Gentle ventilation, iNO and ECMO buy time for the lungs to adapt before surgery.

  • Centralised care saves lives

    UK survival at specialist units is now around 70 to 90%, up from around 50% historically, with structured long-term follow-up for survivors.

How the diagnosis is made

From anomaly scan to a clear plan.

The steps a UK fetal medicine, neonatal and paediatric surgical team will normally follow, in order, so families know what to expect and why.

  1. 01

    Antenatal

    Antenatal anomaly scan

    Around 65% of cases are picked up at the 20-week fetal anomaly ultrasound, with stomach, bowel or liver seen in the chest and mediastinal shift.

  2. 02

    Antenatal

    Fetal MRI and LHR

    Fetal MRI and the observed-to-expected lung-to-head ratio (LHR) and percent predicted fetal lung volume help grade severity and predict outcome.

  3. 03

    Antenatal

    Karyotype, CMA and WES

    Invasive testing looks for chromosomal or single-gene causes, alongside detailed fetal cardiology to check for associated heart defects.

  4. 04

    Neonatal

    Chest X-ray at birth

    Bowel loops in the chest, mediastinal shift and a paucity of aerated lung on the affected side confirm the diagnosis in the delivery room or NICU.

  5. 05

    Neonatal

    Blood gas and echocardiogram

    Serial blood gases and echocardiography assess ventilation, pulmonary hypertension and any associated cardiac lesions.

  6. 06

    Planning

    Adult or late presentation

    Morgagni hernias are often incidental findings on chest imaging in adults, sometimes with mild GI symptoms or, rarely, strangulation.

  7. 07

    Planning

    Specialist MDT review

    Fetal medicine, neonatology, paediatric surgery, cardiology and genetics agree the plan and the delivery centre.

Typical pathway: from anomaly scan to a planned delivery at a specialist neonatal surgical centre.

Symptoms

What CDH looks like at each stage.

Antenatal ultrasound signs, the classic neonatal picture in the delivery room, and the very different, often quieter, presentation of adult Morgagni hernias.

  • Antenatal ultrasound signs

    Stomach, bowel or liver in the chest, mediastinal shift, small abdominal circumference and polyhydramnios on the 20-week scan.

  • Immediate respiratory distress

    Severe respiratory distress in the first minutes of life is the classic Bochdalek presentation, with cyanosis and poor perfusion.

  • Scaphoid abdomen

    A flat, sunken abdomen at birth reflects abdominal contents that have moved up into the chest.

  • Bowel sounds in the chest

    Auscultation reveals bowel sounds over the affected hemithorax and absent or reduced breath sounds on that side.

  • Displaced apex beat

    The heart is pushed away from the hernia, so the apex is often felt on the opposite side of the chest.

  • Severe pulmonary hypertension

    Persistent hypoxaemia, right-to-left shunting and a pre-ductal and post-ductal saturation gap reflect high pulmonary vascular resistance.

  • Adult Morgagni presentation

    Often silent and found on a routine chest X-ray or CT, sometimes with vague chest or upper abdominal discomfort.

  • Red flag: acute deterioration

    Any acute drop in saturations, rising CO2 or worsening pulmonary hypertension needs urgent NICU and surgical review.

Treatment

How CDH is treated in the UK.

Antenatal planning, careful delivery-room resuscitation, gentle ventilation, iNO and ECMO where needed, then staged surgical repair by a specialist paediatric surgical team.

  • Planned specialist delivery

    Delivery at a UK neonatal surgical centre such as GOSH, Alder Hey, Birmingham Children's, Bristol, Newcastle, Southampton, Sheffield, Leeds, Cardiff or Edinburgh improves outcomes.

  • Fetal therapy (FETO)

    Fetoscopic endoluminal tracheal occlusion places a balloon at 27 to 30 weeks in severe left-sided CDH to encourage lung growth, based on the 2021 TOTAL trial.

  • Delivery-room resuscitation

    Delayed cord clamping, immediate intubation and orogastric decompression, and avoiding face-mask ventilation which further distends bowel in the chest.

  • Gentle ventilation and iNO

    Permissive hypercapnia, pre-ductal SpO2 targets, high-frequency oscillatory ventilation and inhaled nitric oxide for pulmonary hypertension.

  • ECMO in severe failure

    Veno-arterial or veno-venous extracorporeal membrane oxygenation at UK centres including GOSH, Alder Hey, Newcastle, Glenfield in Leicester and Aberdeen.

  • Surgical repair after stabilising

    Reduction of viscera and primary closure, or a Gore-Tex or biologic patch for large defects, performed thoracoscopically or open by paediatric surgery.

  • Morgagni repair

    Usually elective and often laparoscopic, with a good long-term outlook once the defect is closed.

  • Long-term MDT follow-up

    Structured review of chronic lung disease, pulmonary hypertension, reflux, feeding, hearing, neurodevelopment, recurrence and chest-wall shape.

What this guide is based on

The sources behind every claim on this page.

UK national and international 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 fetal medicine, neonatal or paediatric surgical team knows your family and pregnancy in detail. If in doubt, ask them.

  • CDH EURO Consortium. Standardised neonatal management of congenital diaphragmatic hernia.

  • BAPS (British Association of Paediatric Surgeons). CDH position statements and audit data.

  • RCOG. Antenatal diagnosis and management of fetal congenital diaphragmatic hernia.

  • TOTAL Trial (Deprest et al., NEJM 2021). Fetoscopic endoluminal tracheal occlusion for severe left-sided CDH.

  • NHS England. Specialised commissioning for neonatal surgery, ECMO and fetal medicine.

Red flags

When CDH needs urgent attention.

Situations that change the plan quickly and warrant immediate specialist input from neonatology, paediatric surgery, cardiology or genetics.

  • Failure to oxygenate at birth

    A baby with known or suspected CDH who cannot be oxygenated after intubation needs urgent transfer to a neonatal surgical and ECMO centre.

  • Rising pulmonary hypertension

    Worsening pre-ductal and post-ductal saturation gap or echo evidence of suprasystemic right heart pressures signals the need to escalate therapy.

  • Bowel ischaemia or perforation

    Sudden abdominal distension, bloody nasogastric aspirate or acidosis raises the possibility of ischaemic or strangulated viscera in the chest.

  • Associated cardiac lesion

    Around a quarter of babies have a significant heart defect that changes the resuscitation and surgical plan.

  • Suspected chromosomal syndrome

    Dysmorphic features or other anomalies prompt urgent clinical genetics review and detailed counselling before any decisions.

  • Late-onset respiratory failure

    A previously stable infant with new respiratory distress may have recurrence, bowel obstruction or worsening pulmonary hypertension.

  • Recurrent hernia after repair

    Any new chest or abdominal symptoms after CDH repair warrant early imaging and surgical review.

  • Feeding intolerance and reflux

    Severe GORD, aspiration or poor growth after repair should trigger specialist gastroenterology and dietetic input.

  • Neurodevelopmental concerns

    CDH survivors, especially after ECMO, have higher rates of developmental delay and hearing loss and need structured surveillance.

Living with it

A specialist journey, with structured support.

Four things that make the biggest difference through diagnosis, the neonatal stay and long-term follow-up, from early referral to a lifelong specialist clinic.

A quiet reminder

You are not on your own.

A CDH diagnosis is a lot to hold. UK charities such as CDH UK, Contact and Cerebra sit alongside your clinical team through every stage.

  1. 01 Antenatal

    Get to a specialist centre early

    A prenatal CDH diagnosis should trigger referral to a fetal medicine and paediatric surgical unit for planning, counselling and delivery.

  2. 02 Newborn

    Stabilise before you operate

    Modern practice is to settle pulmonary hypertension and ventilation first, with surgery in the following days rather than immediately.

  3. 03 Family

    Support is available

    CDH UK, Contact and Cerebra offer peer support, information and practical help for families through the neonatal stay and beyond.

  4. 04 Long-term

    Stay in structured follow-up

    A specialist CDH clinic tracks lungs, heart, growth, feeding, hearing and development so problems are picked up early.

Frequently asked

Everything families ask about CDH.

Straightforward answers on antenatal diagnosis, FETO, delivery-room care, ECMO and long-term outcomes.

  • What is congenital diaphragmatic hernia?

    CDH is a birth defect where a hole in the diaphragm lets abdominal organs move into the chest during fetal life. That crowds the developing lungs, causing pulmonary hypoplasia and, after birth, pulmonary hypertension, which are the main drivers of how unwell the baby becomes.

  • How common is CDH?

    It affects roughly 1 in 2,500 to 4,000 live births in the UK. Most cases (around 85%) are posterolateral Bochdalek hernias on the left side. Morgagni hernias account for about 5 to 10% and are anterior and often much milder, sometimes only found in adulthood.

  • How is CDH diagnosed?

    Around two thirds of cases are picked up at the 20-week anomaly ultrasound, with fetal MRI used to grade severity through measures such as the observed-to-expected lung-to-head ratio. After birth, a chest X-ray showing bowel in the chest and mediastinal shift confirms the diagnosis, alongside echocardiography and blood gases.

  • What is fetal FETO surgery?

    Fetoscopic endoluminal tracheal occlusion places a small balloon in the fetal trachea between 27 and 30 weeks in selected severe left-sided cases, encouraging lung growth by trapping lung fluid. The TOTAL trial in 2021 showed a survival benefit and it is now offered in a small number of specialist European centres, with UK families managed via collaborative pathways.

  • Why avoid face-mask ventilation at birth?

    Bag-and-mask ventilation forces air into the stomach and bowel, which are sitting in the chest, and worsens compression of the lungs and heart. Babies with a suspected or known CDH are intubated immediately and a nasogastric or orogastric tube is placed to decompress the gut.

  • What is the long-term outlook for CDH survivors?

    Survival at UK expert centres is now around 70 to 90%, up from around 50% historically. Long-term issues can include chronic lung disease, pulmonary hypertension, reflux, feeding difficulty, hearing loss (especially after ECMO), neurodevelopmental delay, hernia recurrence and chest-wall or spinal changes, which is why structured multidisciplinary follow-up matters.

Related content

Keep reading.

Pulse Healthcare concierge

Send us your enquiry

A concierge service for UK private healthcare. We match you with the best vetted clinics and consultants in our network - they then contact you directly.

So we can match you to the right clinician close to you.

We reply to every enquiry within 24 hours (Mon–Fri). Confidential - your details are never shared outside our vetted consultant network.