He's beautiful, healthylooking little boy, observing the world with bright eyes as he reclines in his baby chair, kicking his legs up in excitement. It’s hard to believe sixmonth-old Ralph Flemming* has had three major operations in his short life and that he’s suffered unimaginable pain.
He’s a brave kid, his parents say. He’s the heartbeat of his family and a blessing from above. But Ralph has had a tough start to life and years of medical treatment and check-ups lie ahead of him. Donovan* and Diana* Flemming will never forget the moment they were told about their son’s rare condition.
They had no idea there was anything wrong with him when he was born in April. He seemed strong and healthy and they couldn’t wait to take him home and introduce him to their three-year-old son. But the paediatrician took Donovan aside and told him the horrific news: their baby was born without an anus.
"We thought we had a healthy baby and then we were told this," Diana says. The medical term is anorectal malformation, which means where the opening of Ralph’s anus should’ve been there was only skin. And instead of the rectum leading to the anus, it opened into the bladder.
It would be impossible for Ralph to pass waste normally, the shocked Donovan and Diana were told. Just five hours after he was born in a hospital in Paarl in the Western Cape, Ralph was transferred to the Netcare Blaauwberg Hospital near Cape Town. “I was still in so much pain after the C-section that I couldn’t even visit him in the ICU before he was taken away,” Diana says.
She saw her son again only three days later. The devastated parents struggled to process the news. “We kept wondering, ‘Why us’?” Diana says. But now, three operations later, they’re hoping Ralph will one day lead a normal life. They’ve also found an answer to the question, “Why us?” “I realised God chose us to be his parents,” Diana says.
“He gave him to us because He knew we’d look after him well.” Diana tells us of her joy and excitement when she discovered she was pregnant in August last year. She thought it would be plain sailing, as it had been when she was expecting her firstborn, Sam*. But her second pregnancy was a lot harder.
Diana struggled with heartburn and high blood pressure and had to go for an ultrasound every third week throughout her pregnancy. “But the scans showed nothing wrong,” Diana says. “We didn’t know anything until the day of his birth.” Donovan was at his wife’s side when she gave birth via Caesarean and everything went smoothly.
Ralph weighed a solid 3,3kg and gave a lusty cry. But his parents’ happiness was soon shattered by the doctor’s diagnosis. Although he was overcome with worry, Donovan tried to reassure his wife their baby would be okay. “My husband was my rock,” Diana says. But the thought of her three-day-old baby going under the knife filled her with terror.
“I was scared he wouldn’t survive the anaesthesia, and that they wouldn’t be able to fix him so he could have a normal life.” During the first surgery a stoma–a small opening–was made on the left side of his lower belly. The colon was rerouted to the stoma so faeces could be drained into a bag outside his body.
These bags had to be replaced every 12 hours and at a cost of R1 200 for 10, it quickly became expensive. At first Diana’s medical aid paid for the bags but later the couple had to pay for it out of their own pocket. Yet nothing could put a damper on the couple’s joy when 10 days after the birth they finally were told they could take their son home.
“Our eldest was so excited to meet his little brother,” Diana says. In June, Ralph needed a second surgery, this time to remove the skin covering his anus and to connect his rectum. During the third operation on 13 July Professor Daniel Sidler, the paediatric surgeon who performed Ralph’s surgery, found that “the last part of the colon – the after/distal to the stoma – was very short and dilated”.
He discarded it. “The stoma part became the neoanus,” Sidler explains. Ralph was in so much pain after this surgery he had to be sedated for three days. “Each time he woke up, he screamed in pain,” Diana says. “For a while he had to be fed intravenously. He got so skinny – even his little neck was bony.
It was really hard to see him like that. It was also hard for Sam. I spent so much time with Ralph in the ICU and kids aren’t allowed into the unit so I barely saw Sam.” Donovan, who’s a craftsman, struggled to get time off work to be with his family. “When he doesn’t go to work, he doesn’t get paid,” Diana explains.
“Our two extended families kept me going.” Doctors warned the couple that if the third surgery wasn’t a success, Ralph might need a fourth operation. “I couldn’t take it,” Diana says. “I thought his little body wouldn’t be able to handle another surgery.” But then something happened that filled the parents with joy and hope: Ralph broke wind through his new anus for the first time – the first sign that the surgery had been a success and things were on their way to working normally.
Ralph was discharged from hospital after 19 days. By that stage, his medical expenses amounted to more than R300 000, but fortunately Diana’s medical aid covered most of the bill. The family organised a fundraising braai to raise money to cover the rest. Although the experience has taken a huge financial toll on them, the couple say it’s brought them closer together.
“We were there for each other the whole time,” Diana says. She returned to her job as a social worker in July and leaves the kids in the care of a day mother. “I feel much better when I’m at work these days because I don’t have to worry about him any more – he’s all right now.”
Ralph will have to wear nappies for longer than other kids, probably until he’s about six years old. He’ll have full control of his bowels only once the muscles in his anus have strengthened sufficiently, Diana explains. “So it’s not over yet,” she says. “But he’s strong; he’ll grow up to be fine – I know he will. I’m positive about the future. He’s an absolute blessing.”
*Not their real names
More about Ralphs condition:
About one in 5 000 babies is born with anorectal malformation – the absence of an anus and a malformed rectum – says Professor Daniel Sidler, the Cape Townbased paediatric surgeon who operated on little Ralph.
The cause isn’t always clear: in certain babies it’s part of a genetic syndrome characterised by abnormalities in the spine, although Ralph hasn’t been diagnosed with spinal problems. Children require surgery and the success of the treatment depends on the severity of the condition.