How to detect congenital heart defects in children

CONGENITAL HEART DEFECTS 

In Uganda, approximately 1.6 million babies are born every year, and 1% of them — about 16,000 babies — are born with heart defects annually. Violet Nabatanzi spoke to the experts about the causes, prevalence, treatment and cost of treatment of congenital heart defects.

When Gloria Nantongo gave birth to her baby, who weighed 3.2kg, she assumed everything was fine. Little did she know, her baby had a congenital heart defect. 

At first, Nantongo did not notice any complications because Erina was breastfeeding well. However, as time passed, Erina’s health began to deteriorate. 
By the time she was nine months old, Nantongo noticed her child was breathing rapidly and losing weight. 

On the advice of a church member, who suspected a heart condition, Nantongo took her baby to the Uganda Heart Institute, where doctors confirmed the diagnosis of a congenital heart defect. Erina was referred to India for surgery. 

Nantongo was introduced to an organisation that facilitates treatment for children with heart conditions whose parents cannot afford the high costs of surgery. 

She reached out to Action for Disadvantaged People with her story and was placed on the waiting list. In December last year, the organisation received funding, and Erina was taken to India for surgery. The procedure was a success and they returned home on January 9, 2025.

Congenital heart defects 

A congenital heart defect is a structural or functional abnormality of the heart that is present at birth. Dr Twalib Aliku, a consultant paediatric cardiologist and outreach specialist at the Uganda Heart Institute, says most birth defects typically manifest when a child is between two to three months old. 

“One of the most common symptoms is difficulty in breathing. Babies with congenital heart defect may breathe rapidly or have noisy breathing,” he says. 

He also points out that the babies often tire easily while breastfeeding, which results in poor weight gain.

“Congenital heart defects refer to heart problems present at birth. These can include holes in the heart, where the heart fails to properly separate oxygen-poor blood from oxygen-rich blood. 

The heart’s walls, which are supposed to separate the blood, may fail to form completely, leaving gaps or defects. This is the most common form of congenital heart defect,” he adds. 

Dr Twalib Aliku, a consultant paediatric cardiologist and outreach specialist at the Uganda Heart Institute, says most birth defects typically manifest when a child is between two to three months old. (Credit: Violet Nabatanzi)

Dr Aliku adds that the heart has valves that act like doorways to ensure blood flows in one direction. 

“These valves can also develop abnormally during formation. They may become too narrow, a condition known as valve stenosis, or fail to close properly. In some cases, the blood vessels responsible for carrying blood to and from the heart can also be abnormal.”

Prevalence 

Globally, it is estimated that 1 in every 100 babies is born with a heart defect, with about half of the cases being serious enough to require treatment. 

In Uganda, approximately 1.6 million babies are born every year, and 1% of them — about 16,000 babies — are born with heart defects annually. Of these, 8,000 require some form of treatment each year. 

Experts say some babies need frequent follow-ups to monitor whether the defect will close on its own or if intervention is necessary. Aliku says out of the 16,000 babies born with heart defects, about 4,000 need surgery to prevent death within their first year of life. 

This proportion varies with birth rates, as countries with higher birth rates and rapidly growing populations, such as Uganda, experience a greater burden of congenital heart disease. 

Uganda’s population growth rate is among the fastest in the world, contributing to the rising number of congenital heart disease cases.

Causes and risk factors 

While the exact cause of congenital heart defects is not always clear, experts say errors during early fetal development may be due to genetic issues or environmental factors. 

Dr Aliku says several risk factors can increase the likelihood of a baby being born with a heart defect. Babies born with genetic conditions, such as Down syndrome, are at a higher risk. 

Additionally, if a mother takes certain medications during early pregnancy, such as drugs for epilepsy or high blood pressure, the risk of heart defects in the baby can increase. 
Infections such as German measles (rubella) during pregnancy can also raise the risk of heart defects, as can poorly controlled diabetes in the mother. 

Preterm babies are at a higher risk because their hearts may not have fully developed, and some genetic heart conditions can be inherited from the father or passed down through family lines. All of these factors can predispose a child to having a congenital heart defect.

Ntambi has helped over 400 children in Uganda get access open-heart surgeries. (Credit: Violet Nabatanzi)

Some medicines during pregnancy cause defects 

Managing heart defects 

Aliku says some heart defects are simple and do not affect a child’s life. In such cases, the child may be advised to return for follow-up after a month or a year.

“However, some defects require immediate treatment. If certain defects are detected in a new-born, medication may be administered to close the defect. For more serious conditions, the child is referred to the Uganda Heart Institute for further management.
For example, if a valve is blocked, a procedure can be performed to open it,” he says. 

He adds: “Simple heart defects, such as small holes in the heart, may resolve on their own over time or may not require treatment, though follow-up is necessary. More severe defects can lead to heart failure or poor weight gain, necessitating surgical intervention.” 

Aliku says at least 80% of heart defects can be managed at Uganda Heart Institute. 
Some procedures, such as widening a narrow blood vessel, cost approximately sh3.5m. More complex surgeries can cost about sh18.5m.

Sh40m treatment 

Dr Aliku says the actual cost of a single heart surgery could be about sh40m. This figure covers only the costs for the tests and the operation itself. It does not include doctors’ salaries, professional fees, or consultation charges.

Referrals for complex cases 

About 10% to 15% of heart defects are too complex to be treated within the country. When these cases arise, parents are advised to get sponsors to help cover the costs of treatment abroad. 

Fortunately, several sponsors work with the Uganda Heart Institute to facilitate these surgeries. 

Sponsors who have been recognised for their support include President Yoweri Museveni, Action for Disadvantaged People, the Rotary Club, the Indian Association; and Samaritan’s Purse, a US-based organisation among others. 

Nantongo

Detecting heart defects in unborn 

Pregnant mothers in the second trimester (between three and four months), are advised to undergo a scan to check if the baby has any defects. 

At this stage, the baby is slightly larger, making it easier to detect certain anomalies. The ability to detect heart defects depends on the quality of the scanner. During this period, many severe heart defects can be identified. 

If a problem is detected, there is a high chance it can be confirmed with further examination. Typically, the people performing the scans are not doctors. 

However, when they notice an issue, they refer the case to an obstetrician or a heart specialist who can provide a more accurate diagnosis of complex heart defects. 

This enables healthcare professionals to plan for delivery and care while the baby is still in the womb. In Uganda, only a few hospitals, primarily in Kampala and major towns, have the capability to diagnose the conditions. 

A highly- skilled sonographer or ultrasound specialist can often detect heart defects. If a sonographer suspects heart disease and observes symptoms, the diagnosis is confirmed through an echocardiogram (ECHO) scan. 

This scan allows for a detailed examination of the heart, checking for the presence of heart walls, valve functionality, and the condition of arteries and blood vessels. 

The ECHO scan is considered the gold standard for diagnosing heart problems. George Ntambi Salongo, a former businessman, has helped over 400 children in Uganda get access open-heart surgeries. 

Ntambi who is the executive Director of ACDIPE, says he receives new cases of babies needing similar sponsorship every day. “Most of the cases involve congenital heart defects that cannot be treated locally,” he says. 

He adds: “The children are operated on in India at Narayana Health Hospital. After negotiations with the hospital, the cost per surgery was reduced from $20,000 to between $5,000 and $8,000, depending on the child’s condition,” he adds. 

This discount was granted because ACDIPE frequently arranges surgeries there, enabling him to save more lives. Commenting on the sources of funding, Ntambi says the money comes from partnerships with parents and families, who sometimes contribute what they can. 

He says he also receives support from organisations and entities such as Centenary Bank, Rotary clubs, and Bank of Uganda.

Cost of surgery 

Dr Aliku says what makes heart surgery unique is that during open-heart surgery, the heart must be temporarily stopped. 

“When the heart is stopped, the patient must be connected to a heart-lung machine, which takes over the functions of both the heart and the lungs since they work together.” 

“This machine diverts blood from the patient, processes it, and then returns it to the body to keep vital organs such as the brain, liver, and kidneys functioning during the procedure. Throughout the operation, various factors need to be closely monitored, such as oxygen levels, blood glucose levels, and bleeding. All these tests incur a lot of costs,” he says. 

Dr Aliku says the actual cost of a single heart surgery could be about sh40m. This figure covers only the costs for the tests and the operation itself. It does not include doctors’ salaries, professional fees, or consultation charges.