Keeping Mnotho’s heart beating

2017-08-23 16:41
The Mndebele family: Mbalenhle, Mnotho and uncle Ayanda at their home in Newcastle. INSET: Mnotho Mndebele with the equipment that keeps his artificial heart beating.

The Mndebele family: Mbalenhle, Mnotho and uncle Ayanda at their home in Newcastle. INSET: Mnotho Mndebele with the equipment that keeps his artificial heart beating. (Ian Carbutt)

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Almost two months ago, five-year-old Mnotho Mndebele made medical history when he became the youngest patient in Africa to receive an artificial heart.

I travelled from Pietermaritzburg to Newcastle to meet this little Zulu warrior who is not immune to fear but continues to fight in spite of it.

After hours on the road along with Witness photographer Ian Carbutt, admiring the breathtaking countryside scenery, we finally arrive in windy and dusty Newcastle.

We stoped at the Newcastle Mall and receive instructions to travel another 25 km to OSizweni township where the Mndebele family live.

The township is surrounded by RDP houses and it is clear that most people in the area live in poverty. I am left wondering if any of the locals know of this young fighter living in their midst.

Fearful we might get lost, Mnotho and his mother, Mbalenhle, meet us halfway at the Theku Plaza in their maroon Toyota Tazz, and we are escorted to their homestead.

There we are warmly welcomed by Mnotho’s maternal grandmother, Thabile, his uncle, Ayanda, and other relatives.

At the homestead we are officially introduced to Mnotho, who jumps out of his mother’s Tazz carrying a small backpack in which the external battery pack for his artificial heart is kept.

It is a backpack Mnotho will have to carry around for the next couple of years until he is healthy enough to undergo a heart transplant.

Mnotho’s life changed forever after he was diagnosed with cardiomyopathy — a disease that makes the heart unable to pump an adequate supply of blood around the body.

On June 21, he underwent a groundbreaking surgery and became the youngest patient in the continent to have the heart ventricular assist device (HVAD) implanted.

“He is getting used to carrying the bag around. I decided to buy him this one because it doesn’t make it too obvious,” his mother tells me.

Before we continue with the interview and update on Mnotho’s condition, Mbalenhle invites us to her bedroom where she lays the equipment helping to run the pump keeping her son alive out on top of her bed.

The equipment includes four batteries, a battery charger and multiple power adapters.

I also see the controller, which is like a mini computer used to monitor the pump. A driveline cable from Mno­tho’s heart passes through the skin, connecting the implanted pump to the external system components.

Mbalenhle explains that the monitor provides text messages and audible alarms to help manage the system.

I learn that the controller is powered by two power sources — two batteries, or one battery and electricity from a wall or car outlet. One pair of batteries gives up to eight hours of mobile support.

“He carries two of the batteries with him, while the other two remain in the charger. The batteries in the backpack interchange automatically. We have to ensure that the batteries are fully charged at all times,” she tells me.

Mbalenhle explains that at night, one of the two batteries in the backpack is disconnected from the monitor. At night, the monitor runs with one battery and is also connected to an adapter that uses power from an electrical outlet.

In case they have to travel long distances, the pump comes with a DC adapter, which uses electricity from a car outlet.

“The device also comes with a protective shower bag which ensures that while he takes a bath, the monitor does not get wet.”

Mbalenhle admits that adjusting to Mnotho’s condition has not been easy. She says the support she has received from her family helps her to accept her son’s condition.

“We are taking it one step at a time. My family has been very supportive in managing Mnotho’s health.”

When Mbalenhle, an EMRS paramedic, is at work, little Mnotho stays with his gogo and uncle. They ensure that he takes his medication on time and look after him.

“I call every hour to check up on him when I’m at work. I have also put up a medicine chart on the wall with instructions on how he takes his medication.”

Mnotho will resume his Grade R in 2018. “He has had to change schools. The cardiologists at Sunninghill advised me to enrol him at a school closer to a hospital in the case of an emergency,” the mother said.

Looking back at the journey she has travelled to save her son’s life, Mbalenhle admits it has not been easy.

“At one point I thought I was losing him. It was not easy watching him on that hospital bed. I felt helpless like I was not doing enough as a parent. I wanted to switch places with him and take his pain away.”

A staunch Christian, Mbalenhle says prayer sustained her through the difficult time. “I thank God for giving my son a second chance,” she says.

Although Mnotho looks like a normal healthy and happy boy, having the mechanical heart transplantation limits his lifestyle.

“Doctors put him on a strict healthy diet. He has had to cut back on junk food. That has not been easy; he complains and asks us to buy him vetkoeks,” laughs Mbalenhle.

Playtime has also become restricted, as Mnotho can no longer visit friends.

“We can’t allow him to go and play elsewhere; it’s risky. He can only play in the yard and there must be an adult to supervise him at all times.”

The mother tells me that prior to the surgery, she tried to explain the procedure to Mnotho.

“He was very scared of the operation. He’s very inquisitive. I had to explain where the pump will be coming from and how it will assist his heart.”

For me it is evident that when Mno­tho’s health deteriorated, it strengthened ties between the close-knit Mndebele family, who gathered around Mbalenhle during our interview as a sign of their unwavering support.

“We were all devastated. Mbalenhle is the sole breadwinner in this family and she had to leave work to focus on Mnotho’s health. This impacted on her financially as the medical bills skyrocketed. What kept the family together was the love we share for one another,” said gogo Thabile.

The family of seven have become very protective of Mnotho — they understand that a small mistake could have dire consequences for his heart.

Read more on:    pietermaritzburg

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