When I arrive in Namugongo, a Kampala suburb, I find Agnes Musiimenta, 35, and her daughter Daisy (not real name) playing inside the house.
A few moments later, Musiimenta reveals that despite Daisy’s playful nature and seemingly healthy appearance, the little girl has been through a lot of pain.
How it all began
Musiimenta says when she was pregnant, she constantly fell ill and experienced on and off bleeding. Then in June 2016, Musiimenta remembers waking up at about 4.30am bleeding heavily. In fact, she says, her bed was covered in blood. Scared, she stood up and began to walk.
“Then, huge pieces of blood clots started coming out of my private parts. Every time I took a step, a chunk would drop on the floor. I began thinking that these clots were probably parts of the baby coming from the womb,” she relates.
Musiiment used a towel to deal with the flow and because her husband, an army officer, was away on duty, neighbours rushed to her rescue and drove her to Paragon Hospital in Bugolobi. On the journey, Musiimenta managed to call the gynecologist, who had been monitoring her pregnancy. Although he was not on duty, he promised to arrive at the hospital in 30 minutes.
Musiimenta arrived at the hospital at about 5.30am and was immediately prepared by the nurses and taken to theatre. All they could do now was wait for the doctor. Musiimenta who was conscious and wailing called him again.
When the doctor finally arrived, a caesarean section was immediately performed. Musiimenta woke up at about 10am and was happy to be alive. However, this happiness was short lived after being told that her baby was battling a number of complications.
When she finally saw the baby, her skin tone was a mixture of black, blue and pink colours,had trouble breathing and was foaming at the mouth. A specialist advised that the baby be transferred to International Hospital Kampala (IHK), in Namuwongo. This was done on June 13, 2016 and Musiimenta joined her on June 14.
During the first days of the baby’s admission, doctors carried out a number of tests but the results were always inconclusive.
“On some days, I was told she had high blood pressure. On other days, down syndrome, among other illnesses. I was puzzled because they were also not sure what was wrong with her,” she says.
It was not until they realised that she could not swallow fluids properly that doctors got their first clue. Tests revealed that Daisy had esophageal atresia, a congenital defect where in most cases, the upper esophagus does not connect with the lower esophagus and stomach. This was why she was having trouble swallowing. An emergency surgery was conducted and the problem was corrected. However, Daisy continued having other notable health issues including difficulty breathing.
So, the medical team at IHK took her to SAS Clinic on Kampala-Bombo Road for a heart scan.
“Unfortunately, results showed that she had two holes in the heart,” she says.
Musiimenta knew this was obviously a serious condition after having heard of numerous stories of children battling the same ailment. She was devastated.
Back at IHK, her parents were informed that an operation to correct the heart defects was only possible when Daisy turned two or three. She was discharged on July 4, 2016.
From SAS Clinic, Daisy was taken back to IHK.
“Back at IHK, the doctors informed us that Daisy’s condition now needed to be managed by the Uganda Heart Institute. They advised us to visit the institute after getting discharged,” she says,
Daisy was discharged from IHK on July 4, 2016.
A few days later, Musiimenta made the visit to the Uganda Heart Institute, in Mulago with Daisy.
“While here, we were told that her surgery had to wait because they needed to monitor her for a while. Also, they hoped she would gain more weight and most importantly the holes given a chance to close by themselves,’ she says. For now, they had to make visits to the institute from time to time.
When the institute issued the final medical report on September 21, 2017, part of it read, “Large perimembranous Ventricular Septal Defect (VSD), with inlet extension, mild Tricuspid Regurgitation (TR), severe Pulmonary Hypertension (PHT), bilateral Superior Vena Cava (SVC), and, abnormal take off of left subclavian artery.
In other words, she had one big hole. The other smaller one managed to close on its own.
In Uganda, there is only one heart institute at Mulago. Although the facility has capacity to treat heart related diseases, the institute is still grappling with challenges including limited specialised medical equipment, lack of enough intensive care unit beds to run operations. Without these beds, the doctors are limited on the surgeries they perform. The institute receives more than 500 children annually who need heart surgery.
“Once Daisy was more than one year old and the doctors felt she was ready for the surgery, her name was put on a waiting list,” she says.
Life at home
While waiting for heart surgery, Daisy continued fighting for her life.
“There were times she failed to breath at the night and had to be rushed to hospital. Sometimes, she got attacks, similar to those of an asthmatic patient. She wheezed so badly and her heart beat so fast,” Musiimenta says.
Even a simple cold would lead to hospital admission, sometimes for days or weeks. “I would go to my bedroom, lock myself in and cry endlessly,” she says.
Then, she turned to prayers. “Whenever someone mentioned that there was a pastor who prays for babies, I would run there. I was desperate for a miracle for my child. I could not bear to see her suffer,” she says.
According to Musiimenta, the prayers gave her hope and sanity even when it was hard to keep working. In the end, she chose to stay home and look after her daughter, at least for a while.
Daisy eventually had successful heart surgery on February 22, 2018. By the time of the surgery, one hole had closed. So, the operation aimed to close the second hole. Daisy spent only two days in Intensive Care Unit (ICU) after the surgery, four days in the general ward and was discharged.
Musiimenta does not have a conclusive figure on how much money her family spent. All she can say is that it was a lot.
Regarding how they managed to come up with the money, she says her husband’s employer was very helpful in meeting most of the expenses. There were also contributions from family members, friends and well-wishers.
When Daisy was discharged Musiimenta would worry about every little fall, cough or any other illness thinking these would cause harm.
Miraculously, the little girl began hitting different milestones while the doctors slowly phased out her medication.
Today, Daisy is no longer on medication. She is healthy and living a normal childhood.
Musiimenta advises other mothers nursing sick children to make doctors and nurses their personal friends.
“They are very resourceful and can connect you to other helpful people,” she says.
Secondly, know whom to keep around during such difficult times.
“Not everyone means well for your child,” she concludes.
The case of holes in the heart
Dr Proscovia Mugaba, a peadiatric cardiologist at Nsambya Hospital says: “Some causes are linked to risk factors such as family history, use of certain medication during pregnancy, a mother’s lifestyle during pregnancy, among other factors. Some of the common indicators that a child has a hole in the heart include having an abnormal heartbeat, poor weight gain, excessive sweating, pneumonia and other related chest infections, among symptoms.
Once any of these signs are detected, the patient should see a cardiologist at a heart treatment centre. It should be noted that smaller holes in the heart, unlike the bigger ones, sometimes close on their own.”
In some cases, diagnosing heart disease can be done even before the baby is born.
This, however, is not easily possible in Uganda because of numerous challenges including limited specialised personnel and lack of a prenatal screening programme which is helpful in identifying birth defects in a featus, among other issues. Sometimes, when parents, especially mothers, discover that their baby has a heart problem, they blame themselves.
Some even become superstitious by thinking their child was bewitched or cursed. But, this is not always the case. Heart disease is like any other medical condition that can be managed well if the appropriate medical attention is sought.