Chief - Paediatric Cardio Thoracic and Vascular Surgery (CTVS), Artemis Hospitals, Gurgaon, India
Part 6 of 14 in Correct Timing for Congenital Heart Surgery
Late-Presenting Congenital Heart Disease: What to Do When Diagnosis Comes Too Late
August 6, 2026
When congenital heart disease is diagnosed late, cardiac catheterisation should still be offered before concluding that a child is inoperable, since a meaningful proportion of children thought to be inoperable on clinical grounds alone turn out to be operable, even if at higher risk.
Why late presentation is a common problem
In resource-limited settings, diagnosis of congenital heart disease is often made late, and by the time families seek treatment abroad, the child's condition may have progressed. This is a recurring, everyday challenge, not a rare exception, in regions where specialist paediatric cardiology and cardiac surgery services are limited.
How different conditions respond to late presentation
Late-presenting patent ductus arteriosus and cyanotic conditions other than transposition of the great arteries are usually still operable, sometimes with a somewhat higher risk. Late-presenting shunt lesions such as large ventricular septal defects, however, are more likely to become inoperable once pulmonary artery pressure has risen too high.
Why cardiac catheterisation still matters
Even when a child appears clinically inoperable, offering a cardiac catheterisation is worthwhile, since a significant, if not large, proportion of these children turn out to be operable on catheterisation, albeit at higher risk. When a child is confirmed to be truly inoperable, appropriately timed medical management, including correctly timed diuretics and pulmonary vasodilators, can still allow survival of 25 to 35 years with good quality of life, underlining why late presentation should not be treated as the end of the road.
Why early screening matters
Promoting pulse oximeter screening of newborns, at birth and again at one and six months, and referring low-saturation infants for an echocardiogram early, is one practical way local doctors can help catch congenital heart disease before it presents late, giving children the best chance at timely surgery.
← TGA with VSD and Pulmonary Stenosis: Rastelli and Nikaidoh Procedures | Series index | What Makes a Good Paediatric Cardiac Surgery Programme →
This article is based on a Jivo Masterclass session conducted by Dr. Aseem R. Srivastava, Chief, Paediatric CTVS and Adult Congenital Heart Diseases, Artemis Hospitals, Gurgaon, India. The article has been summarised with the assistance of an AI tool from the original masterclass recording. Watch the full Masterclass recording
This guide is based on a live Jivo Masterclass — Dr. Aseem R. Srivastava taught doctors across Africa on August 31, 2025.
FROM THE LIVE Q&A
Dr. William Gataga (Zimbabwe)
What is the average cost of ASD closure?
Dr. Aseem R. Srivastava
Approximately 5,500 USD.
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Frequently Asked Questions
What is the correct timing for a patient with transposition of the great arteries (TGA), VSD, and LVOT obstruction? Also, since we live in a resource-limited country where diagnosis is sometimes made late, and patients may then ask for treatment abroad after a late diagnosis, what is your recommendation for handling late presenters, especially with simple shunt lesions?▼
For TGA with VSD and LVOT obstruction, these kids essentially have pulmonary stenosis with a VSD, and timing depends on the kid's oxygen saturation — they will need a Rastelli or a Nikaidoh operation, both requiring an implant, and the intent is to give the biggest implant possible since a smaller implant means an earlier return for a change. If saturations are above 75% and the kid is growing and doing well, they can wait and have surgery at around one year of age; if saturations are less than 75% with significant failure to thrive, they should come for surgery at any age or weight. On late presenters: we are also a resource-limited country — four or five surgeons doing this work for half of India — and face the same problem of kids coming late every day. My suggestion is education programmes, including pulse oximeter screening at birth, 1 month, and 6 months, referring for an echo early if abnormal. Late-presenting PDAs and cyanotic conditions apart from TGA are usually still operable, even if at slightly higher risk, but VSD shunt lesions can become inoperable if too late — however, even when a kid looks clinically inoperable, we always offer a cardiac catheterisation to confirm, since a significant proportion will still turn out to be operable, if high risk. And even an inoperable VSD child, with good, appropriately timed medical management (diuretics, pulmonary vasodilators), can still survive 25–35 years, whereas without that care they will die much earlier.
What is the average cost of ASD closure?▼
Approximately 5,500 USD.
Should a child be considered inoperable without further testing if congenital heart disease is diagnosed late?▼
No. Cardiac catheterisation should still be offered before concluding a child is inoperable, since a meaningful proportion of children thought to be inoperable on clinical grounds alone turn out to be operable, even if at higher risk.
Which late-presenting congenital heart conditions are usually still operable?▼
Late-presenting patent ductus arteriosus and cyanotic conditions other than transposition of the great arteries are usually still operable, sometimes with a somewhat higher risk.
Which conditions are more likely to become inoperable with late presentation?▼
Late-presenting shunt lesions such as large ventricular septal defects, once pulmonary artery pressure has risen too high.
What can be done for a child confirmed to be truly inoperable?▼
Appropriately timed medical management, including correctly timed diuretics and pulmonary vasodilators, can allow survival of 25 to 35 years with good quality of life.
How can local doctors help catch congenital heart disease before it presents late?▼
By promoting pulse oximeter screening of newborns at birth and again at one and six months, and referring low-saturation infants for an echocardiogram early.
In This Series: Correct Timing for Congenital Heart Surgery
- 1.Correct Timing for Congenital Heart Surgery
- 2.Atrial Septal Defect (ASD): Why the Best Age to Close It Is 3 to 4 Years
- 3.AV Canal Defect: Why Surgery Is Needed by 3 to 4 Months of Age
- 4.Coarctation of the Aorta: Why Immediate Surgery Prevents Death and Lifelong Hypertension
- 5.Cost of Congenital Heart Surgery in India
- 6.Late-Presenting Congenital Heart Disease: What to Do When Diagnosis Comes Too Late
- 7.What Makes a Good Paediatric Cardiac Surgery Programme
- 8.Patent Ductus Arteriosus (PDA): When to Close and How
- 9.Total Anomalous Pulmonary Venous Return (TAPVR): Why Surgery Cannot Wait
- 10.Tetralogy of Fallot: Timing of Repair and Why Waiting Is Dangerous
- 11.Transposition of the Great Arteries (TGA): Why Timing Is a Matter of Days
- 12.TGA with VSD and Pulmonary Stenosis: Rastelli and Nikaidoh Procedures
- 13.Truncus Arteriosus: Why Newborns Need Surgery at Diagnosis
- 14.Ventricular Septal Defect (VSD): When Small Holes Close on Their Own and When Surgery Can't Wait