Adong cries out again to save son with heart defect
Timothy Otimkica, and his mother, Ms Agnes Adong at Gulu regional referral hospital on April 1, 2025. PHOTO/SUSAN ACHOLA
What you need to know:
- Even after her son was referred to Mulago Heart Institute in Kampala for an urgent operation, the single mother of six could neither afford the transport fees required nor the operations, treatment and upkeep costs while at Mulago National Referral Hospital, writes Susan Achola
In mid-2022, when Ms Agnes Adong’s 1-year-old son Timothy Otimkica was referred from Adak Health Centre III in Lakwaya Sub-county, Omoro District, it was all hope for the entire family that the toddler would quickly get relieved of the condition that had tormented him for months.
Otimkica was in August 2022 referred to St Mary’s Hospital Lacor after he had been managed for pneumonia when he presented with a severe cough, difficulty in breathing and low weight gain. A day later at St Mary’s Hospital Lacor, he was diagnosed with atrial septal defect (ASD).
A septal defect, sometimes called “a hole in the heart”, is a hole in the septum, the muscle wall separating the chambers of the heart. Doctors at the hospital told her that her son had a ‘hole in his heart’, a congenital heart defect, following the results of an echocardiogram (heart scan) conducted.
Otimkica was referred to the Uganda Heart Institute in Kampala. However, his mother would not be taken to the institute at the time since she is a peasant farmer and neither does his father, a UPDF deserter, would afford the costs.
“I was referred to the Uganda Heart Institute by Lacor Hospital instantly, they also said that my son shouldn’t take a week before being operated on, but I and his dad did not have any money,” Ms Adong said.
Using herbs
Instead, he was enrolled on herbal medication which she said lasted for only a month after the family lost contact with the herbalist, since they did not have the means to communicate with her.
“His relief was short-lived. The lady who connected me to the herbalist was long gone, and because I had no mobile telephone, there was no way of linking with the herbalist,” she added.
A fortnight ago, Otimkica, who woke up with a stomach and facial swelling, was rushed to Gulu Regional Referral Hospital.
''I feared taking him back to Lacor Hospital because we had already been referred to Mulago Hospital and I couldn’t afford to take him there. Doctors again made it clear that there was a hole in his heart,” she said. “When he wants food, we have to remove the air supply system in a few seconds, put food into his mouth and place back the equipment,” she added.
State of Gulu Hospital
A medical officer at Gulu Regional Referral Hospital, who spoke on condition of anonymity since he is not allowed to speak to the press, said while the ambulance is there, it lacks the fuel to transport Adong’s son.
Without specifying the cost required for the fuel, the medical officer said: “We don’t have fuel. Another fear is the upkeep cost while at the heart institute, and also the costs involved in the operation and treatment of the boy. This family are going through many challenges.”
Otimkica has now been on constant oxygen supply for several days since their admission at the Gulu Regional Referral Hospital’s Acute Care Unit (Children’s Clinic). Ms Adong, who said they can nolonger cater for any bill, added that they have spent the many days without food.
Paediatrician speaks out
Dr Venice Omona, a consultant paediatrician at St Mary’s Hospital Lacor, said: “A ‘hole in the heart’ means the wall separating the right chambers of the heart from the left has a defect, it is not fully formed, or a part of it is not formed. This means there will be mixing of blood, overworking the heart for it to meet the body’s demand.”
Dr Omona explained to the Monitor that since the heart and lungs work together, anything affecting the heart affects the lungs and that in the case of the atrial septal defect, the lungs get overloaded and overworked. While there is no specific or known cause for holes in the heart, there are several factors that have to be at play, like genetic predisposition, but this also depends on the environmental factors, he said.
“A mother’s health condition, for example, a mother with uncontrolled diabetes and maternal exposures like medications used for managing other health conditions, can pass a condition to the fetus,” he said.
Subsequently, consumption of illicit substances like alcohol and tobacco by the mother before and during the first month of pregnancy increases the cases of giving birth to a child with problems with the heart and finally, a mother getting infections for example German measles rubella within the first few weeks of pregnancy before the heart is formed, Dr Omona stated.
“Mothers of advanced ages (35 and above) have higher chances of getting children with congenital malformations including the heart however in the general population there are few mothers of such ages having children meaning the cases are with mothers in the normal childbearing ages (15-34yrs), so age may not matter a lot but as to work together with other risks,” he said.
Advice
Dr Omona cautions pregnant women to stop consuming illicit substances like alcohol and tobacco, including those on medication.
“The mother’s nutrition and overall health are also important. If the mother is overweight or obese, she is advised on that before she gets pregnant because the intention is for this mother to be healthy before, during and after the pregnancy. Mothers with chronic medical problems are guided before pregnancy, too,” he said.
Whereas our African setting does not take pre-pregnancy or pre-conception care seriously because most people discover they are pregnant, this would be the best prevention measure, Dr Omona said. He added that the ability of medics to diagnose more cases has been enhanced by technology.
“Between 2013/2014 Gulu Regional referral hospital did a study which showed out of 295 children with cardiac issues and majority had hole in the heart,’’ he said.
Referrals
Between 2007 and 2014 the Uganda Heart Institute handled a total of 4,500 children (referrals) and 75 percent had cardiac problems. Dr Omona says if there is a problem with the heart at birth, a child requires immediate review by a cardiologist.
However, unfortunately most regional hospitals across the country do not have a pediatric cardiologist and the economic condition of the parents also sometimes makes it challenging for the children to be taken to the Uganda Heart institute once referred.
While the Uganda Heart Institute has been a blessing to patients with congenital defections, it cannot yet perform all the surgeries because of their nature and complexity and cases are referred to the developed world.
Sadly this becomes very costly for families. According to medical workers, ASD causes stress on the heart, and can cause the right atrium, ventricle and pulmonary arteries to become enlarged. If a hole hasn’t closed on its own within a child’s first two years, or if the hole is larger than 8 to 10 millimetres, surgery may be necessary. If large holes aren’t closed, there can be long-term consequences to the lungs.
About heart defects
According to the Uganda Heart Institute (UHI), an Atrial Septal Defect (ASD) means that there is a hole located between the upper chambers of the heart (the right and left atria).
What doctors say?
Since the pressure is higher on the left side of the heart, blood gets pushed through the hole from left to right, causing the right atrium to become enlarged. If a baby is born with a hole in the septum, blood leaks back from the left side of the heart into the right, If the leaking is minor, there may be only minor problems; however, if there is much leakage, the heart will try to make up for this by getting larger.
Children with the condition normally present with symptoms, including shortness of breath or trouble breathing, palpitations (feeling your heart beat strongly) and a failure to have it grow normally.
Even though ASD is present from birth, symptoms often do not appear during childhood, however, the right atrium may become larger over time, causing problems in adulthood, including heart failure. Whereas about 40 percent of atrial septal defects will close by themselves before the child is two years old, natural closure is said to be rare beyond that period, with surgeries recommended in severe cases.
Surgery involves covering the hole with a patch to close the hole without open-heart surgery. Surgery to close an atrial septal defect is normally successful in 99 percent of cases. If the surgery is done in childhood, the enlarged heart will return to its normal size in four to 6 months, the UHI document states in part.
During the first six weeks of pregnancy, the baby’s heart begins to form and starts to beat; the major blood vessels that go to and from the heart also begin to form during this critical time. It is at this point in a baby’s development that congenital heart defects may begin to develop.
According to the US-based Mayo Clinic, there are several types of holes in the heart, including atrial septal defect (a hole between the upper heart chambers, called the atria) and ventricular septal defect (a hole in the wall between the right and left lower heart chambers, called the ventricles).
A septal defect allows blood to flow back and forth between the right and left sides of the heart. When there’s a hole in the heart, either at the atrial or ventricular level, the heart just can’t work efficiently. The lungs end up getting too much oxygen-rich blood, which makes both the heart and lungs work harder.
