A little heart champion

2017-08-04 13:27
Mbalenhle Mndebele with her five-year-old son Mnotho, carrying his battery pack. An excited Mnotho recently went toy shopping with his mother after spending several months in hospital before and after his surgery.

Mbalenhle Mndebele with her five-year-old son Mnotho, carrying his battery pack. An excited Mnotho recently went toy shopping with his mother after spending several months in hospital before and after his surgery. (Supplied)

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The mother of Africa’s youngest patient to receive an artificial heart has spoken about the groundbreaking lifesaving surgery.

Mbalenhle Mndebele’s five-year-old son, Mnotho, made medical history when he became the youngest patient on the continent to receive a mechanical heart.

Mnotho, who weighs just 17 kg, is also one of the youngest and smallest patients in the world to have a heart ventricular assist device (HVAD) implanted.

The operation took place on June 21 at the Maboneng Heart Institute, which is at the Netcare Sunninghill Hospital, Sandton.

Speaking to The Witness on Thursday, Mndebele, an EMRS paramedic in Newcastle, said complications with Mnotho’s health began in January.

“The condition was not a birth defect. He’s been a healthy boy all along and attended crèche. He only started getting sick in January after he started Grade R.”

She said Mnotho would constantly complain of stomach aches, fatigue and he was always vomiting.

Upon noticing that he was also losing weight and his face was starting to swell up, she took him to the doctor for a check-up.

There, Mnotho was diagnosed with cardiomyopathy — a disease that makes the heart unable to pump an adequate supply of blood around the body.

“He was admitted to the Newcastle MediClinic hospital for a few days and was later discharged. The doctors told me the disease was incurable.”

Mndebele said two weeks later, her son’s health deteriorated and he was in and out of hospital.

The disease caused his heart to swell, which also impacted his liver. His cardiologist in Newcastle then referred us to a specialist at Sunninghill Hospital.”

Mndebele said when she arrived in Johannesburg in April, cardiothoracic surgeon Dr Viljee Jonker told her Mno­tho’s little heart was not coping.

“They told me he needed an urgent heart transplant or he will die. My heart was shattered. I thought my child would not survive,” she said.

Mnotho had been on the heart transplant list, but unfortunately paediatric heart donations are rare.

The boy remained in the intensive care unit for four months while his mother and the cardiologists looked for options to save his life.

Mndebele’s hope was restored when Dr Jonker suggested the R1,6 million mechanical heart implantation.

“It was his only chance at survival. The doctors said the artificial heart will sustain him for the next few years until he gains much-needed weight. Thereafter he will be healthy enough to undergo a heart transplant,” she said.

While the prospect of saving Mno­tho’s life provided a beam of hope, another stumbling block lay ahead.

“Convincing the medical aid to cover the costs for the implantation was a mammoth task. It took months of convincing for Dr Jonker but the medical aid company finally approved the surgery.”

Mnotho’s life with his new heart out of the hospital’s care officially began on Monday when he was discharged from Sunninghill Hospital.

“He is recovering well and his weight is also picking up. The doctors will continue to monitor his condition,” said the mother.

Over the next few years, he will have to carry a small external battery pack for his mechanical heart in a small backpack. His mechanical heart batteries have to be recharged every eight hours. The two batteries interchange automatically.

“He is a little champion. He understands his condition. The doctors also took time and explained it to him.”

Mndebele said a team of doctors from Sunninghill have offered to visit her family and Mnotho’s school to teach them about his condition.

“It is scary to know that my son’s life depends on a pack of batteries. The important thing is for everyone to ensure that the batteries are always fully charged.”

According to heartware.com, a typical HVAD implant is surgically implanted in the chest, in a sac around the heart known as the pericardial space.

The small size of the pump allows it to be implanted using a smaller incision than required with older ventricular assist device technologies.

The HVAD pump is connected directly to the heart at the bottom of the left ventricle, where it draws oxygen-rich blood through the pump and pushes it into the aorta.

Once blood reaches the aorta, it can flow to the rest of the body.

The driveline is connected to the pump. The driveline exits the body through a small incision in the skin, and connects to the controller.

It’s simple to become an organ donor

According to the Organ Donor Foundation (ODF) you can donate your heart, lungs, kidneys, pancreas and liver. 

These five solid organs can save the lives of up to seven people. You can also improve the quality of life of up to 50 people by donating your skin, bone, corneas and heart valves.  

ODF’s Samantha Nicholls said there is generally a shortage of donors for paediatric patients.

“In some cases the organ such as a heart needs to come from a patient of a similar size — so a child’s organ will be used for a child recipient or a very small recipient.”

Nicholls said it was extremely difficult for parents to give consent for their children’s organs to be used. “We are not medical doctors so I can’t give specific stats of the actual donors but there are more adult donors than children donors.”

She said various factors determine the waiting period for a transplant patient.

“It depends on the patient and how ill they are. Urgent cases are always considered first but there must be a suitable match first,” Nicholls said. 

Signing up to be a donor is simple and it costs nothing. 

Take a minute or two of your time and visit www.odf.org.za or call the toll free number: 0800 22 88 11. 

Read more on:    pietermaritzburg

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