The hole no one saw: Inside life-saving heart surgery

 Doctors at the Mediheal hospital performing a heart surgery on a patient September 27, 2022. [Wilberforce Okwiri, Standard]

For years, Jackline Mudeizi lived in a body that constantly betrayed her: breathless nights, relentless fatigue, and a heart that seemed to race against time. Doctors reassured her. Clinics prescribed medication. Some told her it was stress. Others blamed exhaustion. None saw what was quietly threatening her life.

It was not until a traumatic pregnancy, the loss of her twins, and repeated hospital visits that the truth finally emerged. Jackline, a 33-year-old mother of four from Vihiga County, had been living with a rare and complex congenital heart defect that should have been detected and corrected years earlier.

In November this year, after multiple missed diagnoses and years of uncertainty, doctors at Nairobi West Hospital successfully closed the defect using a delicate, minimally invasive catheter procedure. For Jackline, the intervention marked not only a medical breakthrough, but a deeply personal second chance at life and a stark reminder of Kenya’s silent crisis of late-diagnosed adult congenital heart disease.

Long before doctors discovered the hole in her heart, Jackline had learned to live with discomfort. As a young woman, she often felt unusually tired. Walking short distances left her gasping for breath. At night, she would wake up struggling to breathe, sometimes sitting upright just to catch air.

“I thought maybe it was normal,” she recalls quietly. “You know, you grow up, you work, you get tired. I didn’t know my heart was struggling.” 

Despite frequent clinic visits, no alarm bells were raised. Like many Kenyans, Jackline relied on primary healthcare facilities where advanced cardiac screening is often unavailable. Her symptoms were treated individually: breathlessness, fatigue, palpitations, but never connected to a deeper cause.

“I could go to the doctor, but he could not understand what I was suffering from,” Jackline recalls painfully. “I remember one day I was very unwell. I went to the clinic at my workplace to ask the doctor to give me time off, but he refused and said I was pretending.”

Even after giving birth, she says doctors never believed she was sick, assuming she was feigning illness because she was always at the clinic.

“Even supervisors ganged up against me, saying I was pretending. It was a very hard life for me,” she says.

One day, while extremely unwell at home, a team that supports vulnerable people visited and found her condition alarming. They insisted she be taken to the hospital and even sent transport fare, assuring her they would cover the medical bill.

At the hospital, multiple tests were conducted. When she took the report back to the clinic doctor at her workplace, she says he dismissed it. “He kept the report aside and said he did not understand it. He asked who had sent me to the hospital,” she recalls. 

She sought help from the human resources office, requesting more days to rest. HR sent her back to the doctor, insisting it was a medical issue. The doctor again refused to grant her time off. Eventually, she was given one month of unpaid leave.

“I still had my children, but I was very unwell,” she says. “My heart was pumping non-stop.”

She began medication, which helped control the unusually fast and painful heartbeats, but her underlying condition remained undiagnosed.

That changed dramatically in 2024, when she became pregnant with twins.

Pregnancy placed immense strain on Jackline’s already compromised heart. As the pregnancy progressed, breathing became more difficult. She was admitted several times with complications.

The twins were delivered through an emergency Caesarean section after doctors noticed foetal distress. Both babies were born weighing just over two kilograms and immediately struggled with oxygen deprivation. Later, doctors would confirm that both had cerebral palsy.

Tragically, Jackline lost both twins, one in July and the other in October 2024, after repeated episodes of illness. She still speaks of the losses with a pain that words struggle to carry.

“I remember one night my baby became very quiet,” she recalls. “Even when I touched her, she didn’t respond. I tried to give her air through her mouth. She came back, but later we lost her.” 

Grief, exhaustion, and guilt weighed heavily on Jackline, but her own health continued to deteriorate.

Double loss

Shortly after the loss of her children, Jackline fell critically ill. She experienced severe breathlessness, excessive sweating, and chest discomfort. At one hospital, an X-ray revealed that her heart was enlarged and that fluid had accumulated in her chest.

“They told me my heart was big and there was water in my chest,” she says. “That news disturbed me deeply. I still had children who needed me.”

Further testing revealed that her heart was functioning at just 20 per cent capacity, a dangerously low level. Doctors suspected cardiomyopathy and placed her on medication. While the drugs provided temporary relief, her condition failed to improve.

For nearly a year, Jackline moved between facilities, repeatedly prescribed the same medications, yet her symptoms persisted. Her heart function improved marginally to 25 per cent, but breathlessness and fatigue remained constant companions.

“I kept asking myself why I was not getting better,” she says. “Every visit, it was the same medicine.”

In early 2025, Jackline’s condition worsened while she was at work. Alarmed by chest pain and worsening breathlessness, she insisted on a referral to a higher-level facility. That decision proved lifesaving.

An echocardiogram revealed what previous tests had missed: a large hole on the right side of her heart, an atrial septal defect (ASD), a congenital condition present from birth.

Jackline was diagnosed with a congenital atrial septal defect, a condition in which blood flows abnormally between the heart’s chambers due to an opening in the atrial wall.

In many cases, ASDs are detected and corrected in childhood. But Jackline’s defect had remained hidden for more than three decades, slowly overworking her heart and lungs. 

“I was confused,” she admits. “I had gone to clinics for years. How did they never see this?”

ASDs allow oxygen-rich blood to mix with oxygen-poor blood, forcing the heart to work harder and eventually leading to heart failure if left untreated. In adults, late diagnosis often results in severe complications.

Doctors explained that Jackline’s defect was unusually large and anatomically complex, one that should ideally have been closed in childhood.

At Nairobi West Hospital, further imaging confirmed the severity of the defect. Jackline’s ASD measured more than 30 millimetres and lacked sufficient surrounding tissue, known as “rims, to support standard closure devices.

“This was one of the most technically demanding ASDs we have handled,” says Dr Vijaysinh Patil, an interventional cardiologist and catheter laboratory specialist at Nairobi West Hospital.

“The absence of supportive rim tissue meant the device had very little to hold on to. We had to map the defect carefully, choose the right size, and deploy it with absolute precision.”

In many cases, such anatomy would require open-heart surgery. But Dr Patil’s team opted for a minimally invasive, catheter-based approach, a procedure that demands advanced expertise and real-time imaging.

Using a catheter inserted through a vein in the leg, the team carefully guided a 30-millimetre closure device into Jackline’s heart. The procedure required millimetre-perfect placement.

“One wrong move and the device could dislodge,” Dr Patil explains. “But with careful planning, we were able to seal the defect successfully.”

The procedure, performed in November, was a success. Follow-up echocardiograms showed that blood flow had normalised and that the strain on Jackline’s heart had been significantly reduced.

“When they told me the hole was closed, I felt like I had been given a new life,” she says, smiling for the first time during the interview. 

Her recovery has been steady. She remains on medication for monitoring purposes, but the difference is dramatic.

New lease of life

“Before, I couldn’t breathe properly,” she says. “Now, I sleep well. I don’t wake up gasping for air. I can take care of my children.”

Jackline’s story reflects a much larger and growing crisis in Kenya and across Africa: the late diagnosis of cardiovascular disease, particularly congenital heart defects in adults.

Cardiovascular diseases are now the leading cause of death globally, claiming 19.2 million lives in 2023, according to the Institute for Health Metrics and Evaluation. One in every three deaths worldwide is linked to heart disease.

In Kenya, cardiovascular diseases account for 14 per cent of total deaths and 25 per cent of hospital admissions, according to the World Health Organisation. Alarmingly, many deaths occur in people under the age of 70.

Heart failure alone accounts for between 30 and 50 per cent of cardiac admissions in African hospitals, according to the Pan-African Society of Cardiology. “This is Africa’s silent heart crisis,” Kenyan cardiologists warn.

Experts say several factors contribute to missed diagnoses: limited access to echocardiography, a shortage of trained cardiologists, and low public awareness.

“Symptoms like fatigue and breathlessness are often dismissed,” says Dr Patil. “But they can be warning signs of serious heart disease.”

Late diagnosis means patients present when complications are already advanced, making treatment more difficult and costly. Health experts emphasise the need to strengthen local clinics with basic heart-screening tools and mobile outreach programmes, especially in rural areas. Equally important is patient education.

“People need to know that persistent breathlessness is not normal,” says Dr Patil. “Early detection saves lives.”

According to the Ministry of Health, one in four Kenyan adults lives with hypertension, many of them unaware. Combined with conditions such as diabetes and obesity, cardiovascular risks multiply.

Today, Jackline is rebuilding her life. She cares for her surviving children, attends follow-up clinics, and dares to hope for a future free from constant fear.

“I believe one day I will stop medication and live normally,” she says.

But she remains concerned about others like her.

“If hospitals had the equipment, maybe my problem would have been found earlier,” she reflects. “The heart is sensitive. We need to take it seriously.”