Our sons have no immune system
Ruben and Ruan were born without an immune system so their parents have to go to great lengths to keep them away from germs
THEY can’t do many of the things most new parents do with their kids. They can’t take them to the park or the zoo, they can’t have friends over or even play with their young sons in their garden. The only safe space for the little Roodt brothers is inside their home in Heidelberg, Gauteng, because both Ruben (2) and Ruan (eight months) were born without an immune system and even everyday germs could be a death sentence.
Their mom, Katinka, greets us at the door. “I just need to ask if any of you are sick or have been in contact with anyone who’s sick?” she asks good-naturedly.
Katinka and her husband, Pieter, need to prevent any potentially harmful germs from coming into their home. She sprays our hands with a strong hand sanitiser and we’re asked to remove our shoes and put on face masks before we can meet Ruben and Ruan.
“We try to keep the carpets sterile so the kids can play on them – that’s why we take our shoes off,” explains Pieter (42), a health inspector.
The blonde, blue-eyed brothers look like any other boys their age. Older brother Ruben is watching TV while little Ruan, a dummy in his mouth, sits on a blanket on the floor in the living room. This is a “safe zone” for the boys.
When their sons were diagnosed with severe combined immunodeficiency (SCID) in December last year, the couple quickly became experts at getting rid of harmful germs and they work together like a well-oiled machine.
“Everything is cleaned and sterilised daily – their toys, dummies, everything gets steamed,” Katinka (31) says.
“We knew nothing about this illness,” Pieter says. “We spent so much time in hospitals. At least now we know how to care for them so we don’t go to the hospital as much anymore.”
WHEN Ruben was born in February 2015, he seemed per fec tly healthy. “We were so excited about becoming new parents,” Katinka says. “There was nothing wrong with him – he just had yellow jaundice.”
But three months later Katinka realised something was wrong with Ruben. “He had red diarrhoea. Tests were done to see what had caused it but they found nothing.”
A week later Katinka noticed Ruben was very pale and took him to a hospital in Springs. “The doctors were confused – they couldn’t figure out what was wrong with him. He also started needing oxygen then.”
Ruben was then transferred to the paediatric unit at Netcare Garden City Hospital, Johannesburg. “We were so shocked at how quickly everything was happening. We thought we were going to lose him,” Katinka says, her voice cracking.
Dr Miles Bartlett, one of the doctors who treated burn victim Pippie Kruger, started doing tests on Ruben, who needed a ventilator to help him breathe. He discovered Ruben had pneumocystis pneumonia, a fungus that attacks the lungs of people with a weak immune system, such as those with Aids.
“We couldn’t understand it – our child wasn’t HIV positive,” Pieter says. “We spent every day at the hospital but there was no progress.”
Ruben was connected to a heartand-lung machine for 54 days and during this time Katinka couldn’t hold him. Pieter grew incredibly frustrated. “I talked to God and told him this was the last weekend I wanted to spend in hospital with Ruben.”
Soon afterwards, Ruben started breathing on his own. “I couldn’t believe it. I experienced the hand of God that day,” Pieter says.
After three months in hospital Ruben was sent home, but doctors still couldn’t explain why he’d contracted the lung fungus. The couple hoped their son’s medical troubles were over. But Ruben landed up in hospital with the same problem three more times over the following months.
During this time Katinka fell pregnant again and Ruan was born in June 2016. “This time we were ready, especially after the tough time we’d had with Ruben,” Katinka says.
But the couple were in for another shock. Ruan was born with his intestines outside his body (gastroschisis). The condition hadn’t been picked up on ultrasound scans during the pregnancy. As soon as he was born her baby was whisked off to neonatal intensive care.
“He was seven hours old when he needed to undergo a three-hour operation,” she says. Meanwhile, Ruben again contracted the lung fungus infection and was admitted to the same hospital.
Dr Bartlett suggested the couple take their older son to an immunologist and a few weeks later they decided to get both Ruben and Ruan tested. That’s when they got the shocking news that both boys suffer from the same rare immunity disorder.
THEIR sons are the only two brothers who’ve been diagnosed with SCID, Pieter says.
Both have catheters in their chests through which they’re given the antibodies their immune systems don’t produce. This happens every Thursday and they also have weekly blood tests to check they have enough antibodies to help them fight germs and infections.
The catheters must be cleaned and sterilised every two days and Ruben’s is due for a clean during our visit. He lets out a small moan as his dad cleans the area beneath his collar bone where the pipe enters his body, but he’s soon smiling again.
The only option they have is a bone marrow transplant, Pieter says. Ruben has eight matching donors internationally and two in South Africa, and Ruan has 57 matching donors internationally.
The operation for both boys will cost about R5 million and while their medical aid has offered to make the bulk of the money available, the Roodts must raise R750 000 to get the bone marrow for Ruan to SA.
“Ideally we need to do the operation before April,” Pieter says. “It’s almost a given they’ll end up in hospital in winter when everyone gets sick. Ruan hasn’t experienced a winter yet.”
Last winter Katinka started feeling like she had the flu and couldn’t have any contact with Ruben. “I slept in a spare bedroom and dosed myself with meds. I couldn’t kiss or hug him.”
Once they have the bone marrow transplant the boys will need to be in isolation for two months. After that Katinka and Pieter will need to be on high alert for two years before they can feel assured their sons are cured.
What are they most looking forward to doing with their boys once that happens? “Getting a dog,” Katinka says. “We really want to get them pets.”
“And to go on holiday again,” Pieter adds. “There are so many things they haven’t done yet, such as going to a zoo. They don’t even know what the inside of toy shop looks like.”
To make a donation towards the bone marrow for Ruben’s transplant to South Africa, go to babymarrow. org.