The dream of having a child shattered by a heart defect

Susan Wairimu will never be able to carry a pregnancy, despite her deep longing to have a child or a descendant of her own.

When people hear that a woman is unable to carry a pregnancy, the first assumption is usually that she is infertile, or that she is suffering from conditions, such as fibroids or endometriosis. What is often overlooked, however, is that there are other contributing factors—unrelated to the reproductive system—that can also prevent a woman from carrying a pregnancy to term.

In the case of 35-year-old Wairimu, her inability to conceive is not due to reproductive health issues but rather a congenital heart condition.

Wairimu is a cardiac patient diagnosed with a serious defect known as a large Ventricular Septal Defect (VSD).

Dr Christine Yuko Jowi, Associate Professor of Paediatrics and Child Health at the University of Nairobi and a specialist in paediatric cardiology says a Ventricular Septal Defect (VSD) is a hole in the septum—the wall separating the two lower chambers (ventricles) of the heart. This congenital condition is present at birth.

The hole allows blood to flow abnormally from the left ventricle to the right ventricle, causing oxygen-rich blood to mix with oxygen-poor blood. While small VSDs may be harmless, larger defects can lead to breathing difficulties, fatigue, and other serious health complications.

Wairimu reports that the condition has significantly reduced the oxygen supply to her organs, resulting in partial organ failure, constant fatigue, dizziness, and extreme tiredness due to poor oxygen circulation. Other complications she experiences include thickened blood leading to clots, a weakened immune system resulting in frequent infections, pulmonary hypertension, respiratory issues, strong palpitations, breathlessness, depression and anxiety, cyanosis (a bluish discolouration of the skin due to low oxygen), and both minor and major strokes.

She had no idea what was causing her symptoms until 2019, when she underwent spinal surgery and doctors discovered her heart condition. At first, Wairimu was in denial, but with encouragement and support from both her family and medical professionals, she began to come to terms with the diagnosis.

Previously, she believed her frequent convulsions and fatigue were related to scoliosis—a curvature of the spine that caused a noticeable hump on her back. She thought that surgery would correct the problem and restore her health. Unfortunately, the reality was more complex.

“On the operating table, my surgeon noticed that I convulsed frequently and questioned why. After the operation, I was taken to the Intensive Care Unit and later transferred to the High Dependency Unit. That’s where the doctors began investigating the cause of the convulsions and finally informed me that I had a heart condition called VSD,” Wairimu recalls.

Her diagnosis was life-altering. Today, Wairimu is bedridden and uncertain about what the future holds, as her condition continues to deteriorate. She is no longer able to work, cannot walk long distances, and avoids crowded places for fear of her health being compromised.

“I used to work as a customer service representative, constantly handling back-to-back phone calls. But I could no longer manage the job because I would tire very quickly. Sometimes, I would become so disoriented and fatigued that I fainted at work. It affected my performance so severely that my doctors recommended I begin bed rest in October last year,” she shares.

Growing up, Wairimu suffered from low self-esteem. She was often labelled as lazy or overly sensitive by peers and elders in her village, who failed to realise that her exhaustion and slow pace were due to a serious, undiagnosed heart condition.

“Before I understood what I was going through, I was very irritable and struggled to relate to people. I often felt like others were mocking me whenever they laughed. It was only later that I found out I was suffering from high pulmonary arterial hypertension. The pressure in my lungs made me irritable—it was a physical response caused by the condition,” she explains.

Socially, her life has been limited. She avoids even simple activities, such as walking, being in a room where cooking gas is in use, or staying near charcoal stoves, all of which trigger severe discomfort and isolation from her peers.

“I’ve been through trauma. It’s not easy watching yourself turn blue from lack of oxygen. It’s terrifying to collapse in public and have strangers trying to help you—some don’t know what to do, while others accidentally mishandle you. The feeling of gasping for air without the ability to explain what’s happening is deeply traumatic,” she recounts.

Wairimu admits that, due to her condition, she sometimes becomes confused and unable to find her way home. Her eating habits have changed—she can no longer consume large meals and instead eats small portions throughout the day. Her relationships have also been affected, as many people do not understand her situation, which often leads to tension and misunderstanding.

“I’m scared to go out on my own. I no longer go to town or attend social events alone. I confine myself to my home because I never know when I might collapse. There’s also the fear of tear gas or unrest. I feel psychologically disturbed and live in constant fear,” she says.

VSD is a condition ideally diagnosed and treated in childhood. According to her doctors, the fact that Wairimu has survived into adulthood with such a severe defect is remarkable.

“I’ve started to accept myself. In the past, I pushed myself to work hard, even when I felt unwell. Now, I recognise that I need rest and time to recover. I’ve become more patient with myself and have stopped blaming myself for not doing things as quickly as others do,” she says.

Yet the emotional toll remains heavy. What hurts Wairimu most is knowing she will never be able to carry a pregnancy, a decision strongly advised by her doctors. “My greatest fear is never having a child. That pain cuts deep. I’ve been told not to get pregnant even though my womb is healthy and I’m very fertile. The fact that I can’t be allowed to have children breaks my heart. If I were to die today, I feel like I would be forgotten in just two days,” she confesses.

Wairimu is awaiting a medical procedure known as cardiac catheterisation. This will help determine the extent of the damage to her heart and assess whether she requires an oxygen concentrator to avoid brain damage and worsening cyanosis.

Professor Christine Yuko Jowi, a specialist in paediatric cardiology at the University of Nairobi says symptoms of congenital heart defects, such as VSD often appear within the first few days, weeks, or months of a child’s life. However, if the hole in the heart is small, it can go undetected for years. “They vary depending on the size of the defect and whether other heart issues are present,” explains Professor Jowi. “In babies, common signs include poor feeding, failure to thrive, rapid breathing or breathlessness, and a heart murmur that can be heard with a stethoscope.”

VSD typically develops during foetal development. The muscular wall dividing the left and right sides of the heart—the septum—does not form properly, resulting in one or more openings between the ventricles. These holes allow oxygen-rich blood to mix with oxygen-poor blood, which can strain the heart and lungs. “There is often no single cause,” she adds. “Both genetic and environmental factors can contribute. VSDs may occur alone or alongside other congenital heart defects. In rare instances, a VSD may even develop later in life, such as after a heart attack or specific cardiac procedures.”

Diagnosis can occur at any stage. Sometimes, a VSD is detected through a prenatal ultrasound. After birth, a health professional may pick up a characteristic murmur during a physical examination.

To confirm the diagnosis, several tests, including echocardiograms (which use sound waves to create images of the heart), electrocardiograms (to assess heart rhythm), chest X-rays, pulse oximetry (to measure oxygen levels using a fingertip sensor), cardiac catheterisation, and cardiac MRI scans.

Wairimu now awaits a cardiac catheterisation to assess the severity of her condition and determine whether she needs an oxygen concentrator to avoid complications, such as cyanosis or brain damage.