The little girl is fast asleep on the couch, dressed in pink pyjamas and wrapped snugly in a blanket. She’s blissfully unaware of how close she came to losing her life – and to the fact she’s now regarded as a medical marvel.
Ruveshni Lewis is Africa’s first recipient of a cutting-edge cardiac intervention that’s given her the best chance of living a healthy, active life.
The procedure, performed recently at the Red Cross War Memorial Children’s Hospital in Cape Town, made headlines far and wide – but as far as the six-year-old is concerned, all that matters is that doctors “fixed” her heart.“She’d ask the doctors why they kept hurting her,” mom Jestine (33) says.
“When they explained they were trying to make her heart as normal as other kids’ she got excited.” Mother and daughter recently returned home to George in the Western Cape after a two-and-a-half-month stint at the Red Cross hospital where Ruveshni underwent the life-altering surgery.
The little girl is no stranger to hospitals – she’s been in and out of them for most of her young life after being born with only one heart ventricle, which meant her heart couldn’t pump enough blood to her lungs. Now doctors are hopeful she won’t have to see another hospital ward for a long time.
An atrial flow regulator (AFR) was implanted in her heart, which will ensure adequate blood flow throughout her body (see box right). However, Ruveshni, who’s in Grade R, still has to take a cocktail of drugs to treat high blood pressure and prevent congestive heart failure and fluid build-up, as well as the blood thinner Warfarin to prevent clots forming.
But despite all this she’s getting stronger by the day and Jestine often has to remind her daughter to take it easy. “She tries her utmost to get to the level of her peers,” Jestine says. “She pushes herself physically and sometimes I have to step in and tell her to be mindful of her condition.”
There was no warning sign of the ordeal that awaited Jestine and her husband, Ruchaan (now 31), when they were expecting their firstborn – Jestine had a healthy pregnancy with no complications. “But the labour was a nightmare,” she recalls.
“I pushed and pushed but the baby wouldn’t come. I could just feel something wasn’t right.” Doctors at George Hospital performed an emergency Caesarean section but Jestine and Ruchaan’s joy at the new arrival soon turned to fear. For two days the new parents were kept from seeing their baby.
Doctors told the Lewises they didn’t want them to become too attached to their daughter because they weren’t sure she’d make it. A doctor eventually explained to them what was wrong with Ruveshni’s heart by drawing them a picture. When she was two days old the infant was flown to Red Cross hospital via helicopter for specialist treatment.
Jestine, panic-stricken, wasn’t able to fly with her daughter as she’d developed high blood pressure and had to spend another two weeks in hospital. Her mother, Marjorie, went in her stead.
Ruveshni was put on medication for two weeks to boost her oxygen levels and had her first operation when she was three weeks old. A stent was inserted into her left ventricle to help her breathe on her own. She spent two more weeks recovering in hospital – by which time Jestine had joined her – before being flown back home.
Ruveshni saw an occupational therapist every two weeks to learn how to suck, chew and swallow but although therapy helped, her development was slow. She learnt to walk only when she was two years and three months old, Jestine says. “It was difficult. The only thing that made it easier for me was the support of my family and friends.”
In October last year doctors at Red Cross performed what’s called the Fontan procedure to assist blood circulation (see box below). The procedure went smoothly but there were complications in the days that followed. Ruveshni’s blood pressure went haywire and she spent four weeks in the intensive care unit.
Jestine and Ruchaan – who also have two sons, Joshwin (4) and Jayden (3) – were told to prepare for the worst.
Ruveshni rallied a little after doctors inserted a pacemaker to help regulate her heartbeat, but then her right lung partially collapsed and doctors had to mobilise her with moderate exercise to move her lung back into position. Eventually after six weeks she was allowed home.
Then in January, Jestine and Ruchaan met with Ruveshni’s doctor, Rik de Decker, associate professor of paediatric cardiology at the University of Cape Town. He proposed contacting German professor Nikolaus Haas, who’d previously implanted an AFR between the heart chambers of a four-year-old.
To perform the life-changing surgery on Ruveshni, De Decker had to submit her diagnosis and an application to the creators of the device in Sweden. This was necessary because the device is still under clinical investigation and not routinely inserted – in fact, the procedure had been performed only twice worldwide.
In June they received the good news: her application had been successful and the AFR device was flown to South Africa. The timing was perfect as Ruveshni had developed a bad cough, which could signal an infection. X-rays showed there was fluid in the lungs and she was prescribed medication to decrease the fluid.
But Ruveshni didn’t react well to it and the fluid increased. An ultrasound later revealed her entire lung had filled. Doctors knew she needed urgent attention or she wasn’t going to make it so they flew the little patient and her mom to Red Cross for the AFR implantation.
The five-hour operation, performed by De Decker while Haas guided him via video-call, was a success and though Ruveshni has to go for checkups every two months it’s believed she’ll make a full recovery. There’ve been many ups and downs for the Lewis family. Recently, Ruchaan was told his working hours as a storeroom assistant at a supermarket would be shortened, which means less pay. “It’s difficult,” Jestine says.
But she knows she must be strong – and her little girl’s excellent prognosis is a reason to remain positive, she adds. “Whenever I feel down I remember where there’s life, there’s hope. That’s what I cling to.