When Winfrida Wambura noticed that her five-month-old daughter was breathing rapidly, sweating even in cold weather and tiring quickly while breastfeeding, she knew she needed to seek medical help.
But as she searched for answers, some people in her community suggested that the child’s illness could be linked to witchcraft or traditional naming practices, advising her to seek help from traditional healers.
Winfrida, who is a tailor, chose a different path: she continued seeking medical care, a decision that eventually led to her daughter, Catherine, undergoing heart surgery at Benjamin Mkapa Hospital in Dodoma.
‘I gave birth to my daughter in March 2025, but five months later, I was scared when I saw my baby struggling to breathe and becoming tired while breastfeeding,’ she says.
The mother of four, who lives in Rorya District, Mara Region, took Catherine to a local dispensary, where a health worker consulted other doctors before referring the baby to a visiting physician at Mwalimu Nyerere Memorial Regional Referral Hospital.
At the hospital, about five doctors examined Catherine before determining that she needed specialised cardiac care unavailable at the facility. They referred her to Bugando Medical Centre, in Mwanza Region, where she arrived in September 2025.
Doctors diagnosed Catherine with a hole in her heart and prescribed daily medication, requiring her to attend monthly clinic visits.
‘I was devastated when I learnt that my daughter had a hole in her heart. As a mother, you worry about whether your child will survive and what the future holds. But seeing other children receiving treatment at Bugando gave me hope that Catherine could also get help,’ she said.
Her Christian faith helped her cope with the uncertainty, while the experiences of other families at the hospital strengthened her resolve to pursue treatment.
In April 2026, Winfrida learnt that a medical team from Italy would perform cardiac surgeries at Benjamin Mkapa Hospital in Dodoma. Without health insurance, she faced the challenge of raising money for the journey and treatment. She appealed to relatives for financial support, while Catherine’s father, who does not live with the family, also contributed significantly towards the medical expenses.
The family eventually travelled to Dodoma, where Catherine underwent heart surgery on May 27, 2026.
‘For me, getting the opportunity for surgery was a great relief. I had spent months worrying about my daughter, and I was grateful that she could finally receive the treatment she needed,’ she says.
The operation marked a significant milestone in the family’s search for care. Doctors subsequently informed her that a small portion of the hole remained open but was expected to close gradually as Catherine grew and continued taking her medication.
Winfrida returned with her daughter for follow-up appointments in July and August. Her experience reflects the importance of early recognition and appropriate treatment of congenital heart disease, a condition that can remain undetected in children whose symptoms are not immediately obvious.
Physician and consultant with One New Heart Tanzania, Dr Lioba Joseph defines, congenital heart disease as a structural abnormality of the heart or major blood vessels that is present from birth.
‘Congenital heart disease can affect the walls between the chambers of the heart, the heart valves or the major vessels through which blood flows,’ she says.
International estimates suggest that about eight babies in every 1,000 live births have congenital heart disease, although the burden in Africa may be underestimated because many children lack access to early screening and echocardiography.
A six-year study at the Jakaya Kikwete Cardiac Institute found that congenital heart disease accounted for 80 percent of heart disease cases among children assessed at the national referral centre.
Published in 2024 in the Global Heart journal, the study reviewed 6,058 children who underwent their first echocardiographic assessment between 2017 and 2022. Of these, 3,198 were diagnosed with heart disease, including 2,559 with congenital heart disease.
The findings reflect the burden among children assessed at the specialised referral centre and should not be interpreted as the prevalence of congenital heart disease among all Tanzanian children.
Dr Joseph says parents and health workers should pay attention to persistent symptoms that could indicate a heart defect.
‘In a baby, important warning signs include fast or difficult breathing, difficulty breastfeeding or feeding, becoming tired and sweaty during feeding, poor weight gain, repeated chest infections and bluish or greyish lips, tongue or skin,’ says the doctor.
Some children may appear healthy despite having a structural heart problem, while symptoms such as rapid breathing and poor feeding may initially be mistaken for other childhood illnesses.
‘The important message for parents is that a child does not have to look seriously ill to have congenital heart disease. Early assessment can identify problems before complications develop.’
She warns that significant heart defects can lead to heart failure, pulmonary hypertension, poor oxygenation and malnutrition when diagnosis and treatment are delayed.
However, she says a late diagnosis does not automatically mean that treatment will fail, adding that many children can achieve good outcomes when they receive appropriate care.
‘Every child deserves the chance to grow up with a healthy heart. Congenital heart disease can often be treated, but the earlier we recognise it, diagnose it and connect the child to appropriate care, the better the chance of preventing complications and saving a life,’ the doctor says.
For Winfrida, securing surgery was a major achievement, but maintaining Catherine’s recovery has proved difficult. She says business has been poor, leaving her unable to afford the costs of travelling for medical reviews and purchasing medication.
Consequently, she missed Catherine’s scheduled reviews in September and is yet to attend appointments in October 2026. According to her, the child’s medication ran out nearly a month ago, and Catherine has since been crying, experiencing fever and showing signs of pain around the surgical wound.
‘I managed to get my daughter to surgery, but I am now struggling to raise the money for her medication and follow-up visits. I want her to continue receiving treatment, but the money is not always available when we need it,’ she says.
The reported symptoms require prompt medical assessment, and their cause has not been established.
Co-founder and Director of Communications and Operations at One New Heart Tanzania, Mr Godfrey Maro, says the difficulties families face often extend beyond getting a diagnosis or securing surgery.
‘The problem is not only diagnosis. It is also what happens after the child is diagnosed,’ he says.
He explains that families may struggle to access treatment because of shortages of trained health workers, screening equipment and specialised services, as well as the cost of travelling to referral centres.
‘When heart services are available only in a few centres, families from other regions may have to travel hundreds of kilometres just to get a diagnosis or see a specialist. This means more transport costs, more time away from work and more difficulty coming back for treatment and follow-up,’ Mr Maro says.
He adds that Tanzania needs to strengthen screening at primary and regional hospitals, improve referral systems, train health workers and expand access to specialised cardiac services.
‘We need to reduce the financial burden on families. The cost of transport, accommodation, tests and treatment can prevent children from getting care on time,’ he says.
Mr Maro calls for reliable national data showing how many children are born with heart defects, how many are diagnosed and treated, and how many fail to access care.
Without a comprehensive national register, he says, it is not possible to give a precise figure for the number of children waiting for treatment.
Despite the challenges, Winfrida wants other parents to know that seeking medical attention can make a difference when a child develops worrying symptoms.
‘Parents should not give up or allow fear and stories about witchcraft to stop them from seeking medical care. If a child is unwell, take them to hospital and let health professionals examine them. While faith can give you strength, you must also seek the right medical treatment,’ she says.
Her experience is a reminder that overcoming community pressure and accessing surgery can change a child’s treatment journey, but recovery may require continued support long after an operation.
For Catherine, the next step is to return to medical care and have her current symptoms assessed. For her mother, the determination that took them from Rorya to specialised treatment in Dodoma remains essential as she seeks to keep her daughter on the road to recovery.