Thando Simelane (16) has spent the past seven years waiting for a heart operation, which his parents were initially told was an urgent medical procedure.
For his father, Linda Simelane, the wait has meant spending nights watching his son sleep; fearing that he may move from the position doctors instructed him to maintain and suffer complications or even die.
Simelane said the family was first alerted to Thando’s heart condition when he was in Grade VI and he is now in Form IV.
He said the diagnosis was confirmed after a series of medical tests and the family was informed that the condition needed urgent attention.
The situation became so concerning that the school ,where Thando was enrolled in primary school, eventually contacted his father and asked him to take his son home because they feared he could die while at school.
Simelane recalled the period as one of the most painful experiences for the family, saying they spent about four months with Thando at home without him attending school.
He said doctors had also instructed the family to ensure that Thando slept in a particular position, with a pillow supporting his back so that he remained in a more seated position while sleeping.
According to Simelane, the family takes turns watching Thando at night to ensure that he did not move from the prescribed position.
“He has to sleep with a pillow at the back so that he is almost sitting. We watch him when he sleeps. You cannot just sleep and leave him because you are afraid that he may move,” Simelane said.
He said this had become their routine, with the parents only being able to rest properly once Thando had woken up and gone to school.
Simelane said the family initially understood that the delay was linked to funding, as they were told that money had not been deposited into the Phalala Fund.
For a long time, the family waited while further medical tests were conducted.
He said their circumstances later changed when a donor based in Israel became involved and offered an opportunity for Thando to undergo the surgery there.
Simelane said the family underwent the required tests and the results were sent to Israel, where Thando was reportedly confirmed to be a match for the procedure.
The family was subsequently given a letter to obtain international passports from the ministry of home affairs.
The mother and son were issued with passports in preparation for the trip.
However, Simelane said the family was later informed that the mother could not travel with Thando because she was on antiretroviral treatment (ART).
He said this came as a shock to the family and resulted in the trip being postponed.
Simelane then started the process of obtaining his own international passport so that he could accompany his son.
He said he was subsequently informed that men were not allowed to look after patients in Israeli hospitals, creating another obstacle to the planned surgery.
The family was later told that a nurse had been identified to accompany Thando to Israel and care for him during the procedure.
However, Simelane said time passed without the trip taking place.
When he made enquiries, he said, he was informed that the ongoing war in Israel had made it impossible for Thando to travel there.
He said the family was eventually informed that Their Majesties had deposited money into the Phalala Fund, meaning that arrangements would instead be made for Thando to undergo the surgery in South Africa.
Simelane said this was around last year, but the family was still waiting for the surgery to be done.
“It has been seven years now. When this started, my child was nine years old. Today he is 16. We are still waiting,” he said.
The father, who lives with his son at Mvutshini, said the prolonged wait had slowly eroded the family’s hope.
He said his situation had also become more difficult after he was laid off from his job , leaving him unemployed while he continued caring for his son.
Despite the challenges, Thando has continued with his education at a school in Manzini.
Simelane said what frightened him the most was the possibility of losing his child after the family had waited for so many years for an operation which they were told was urgent.
He became emotional while recounting the moment the family first discovered Thando’s condition and the school’s decision to send the child home.
He said the experience had left a lasting impact on him as a father.
“I am afraid of losing my child,” Simelane said.
Seven years after Thando was first diagnosed, his father said they were still waiting for the urgent surgery that could change the teenager’s life.
For now, the nights remain the same: Thando sleeps in the prescribed position while his father keeps watch, waiting for morning when his son wakes up and prepares to go to school.
Ministry of Health Principal Secretary (PS) Khanya Mabuza said he would follow up on the matter and establish the circumstances surrounding the delay.
| Item | Details reported |
|---|---|
| Patient | Thando Simelane, 16 |
| Father and home | Linda Simelane, Mvutshini |
| Reported waiting period | Seven years, from age nine to 16 |
| Night-time care | Thando sleeps nearly seated, supported by a pillow. Family members watch him so he does not change position. |
| Referral fund cited | Phalala Fund, the government mechanism for specialist medical referrals |
| Ministry response | Principal Secretary Khanya Mabuza said he would follow up and establish the circumstances surrounding the delay. |
Source: Supplied article. The ministry has not yet provided findings on the case.
