There were no warning signs, despite the usual prenatal scans and tests, nothing could've prepared Candice (35) and Hugan Tumber (39) for the day their doctor told them their baby, Bailey, had caudal regression syndrome – a disorder that affects the development of the lower half of the body.
She was born with spina bifida, club foot in both feet, hip dysplasia and a damaged nervous system, but the little girl, who’s now two years old, is on her way to recovery after undergoing surgery.
Her mom, Candice, says she was told her baby had club foot right before her emergency C-section.
“A week before I gave birth, my diabetes was all over the place. The doctor at Barberton General Hospital [in Mpumalanga] suggested that they keep me in for about a week just to monitor my blood sugar levels,” she tells us.
“Then they said they needed to perform an emergency C-section the next day because the baby hadn’t turned. It was quite strange why the baby wasn’t facing down, and the doctor confirmed before the op that Bailey didn’t turn because she has club feet and couldn’t use her feet to move herself,” she adds.
It was a shock but there was more bad news to come.
After giving birth, Candice was told that her newborn also had spina bifida – which occurs when the baby’s spinal cord doesn’t develop properly – and hip dysplasia, which meant that her hip bone was displaced from the socket.
“I didn’t even know what those conditions were, and the doctor told me to just heal and not worry about it or Google it because it would make me worry more.”
Bailey’s treatment began in 2019 and, with it, more complications for Candice.
“I had to take her to Steve Biko Academic Hospital in Pretoria every week,” says Candice, who used to work as a client relations manager for a car company.
When she told her bosses she’d need to take time off work every Thursday to take Bailey to hospital, she says “they basically made me choose between my child and my job”.
“I obviously chose my child.”
Bailey’s orthopaedic surgeon, who prefers to remain anonymous, says they used the Ponseti method to treat the club foot, which allows for correction without invasive surgery. “You try to correct the position of the foot every week, manipulate it and put it in a cast until it comes right” he explains.
Bailey’s feet were put in a brace after the casting phase was done then a tenotomy operation was performed to release and lengthen the Achilles tendons, which connect the calves to the heel.
Bailey’s feet were corrected but she struggled to walk because her hip was displaced, says the doctor.
“The hip was a very challenging procedure because everything is so small,” he recalls. “The operation was to put the hip back in the correct position, and after doing that we applied a cast.”
She was in the cast for six weeks, and the op was a success.
“We took X-rays and the hip was back in its correct position. The issue now is trying to get the child to walk. She needs to be rehabilitated, so we’ll see how she progresses,” he says.
Bailey gets around by holding and climbing on to furniture and crawling.
“She’s not confident enough yet to stand and walk on her own,” says Candice.
It was hard for Candice and Hugan – who works as a tele recruiter at the South African National Blood Service – to keep up with the medical bills.
They also have two other children, Demi-Jade (8) and Ross (4).
Bailey’s treatment at Steve Biko was free but her other surgeries were at Nelspruit Medi-Clinic, which cost them about R82 000.
“I had to sell chips and sweets to make extra money, but we were able to pay for all of it through donations,” says Candice. “I’m very happy and grateful.”
The couple said they’d considered taking legal action against the doctor who didn’t spot the defects during prenatal scans, but were told the don't have a case.
“The lawyer sent us a 41-page questionnaire and one of the questions was, ‘would we have terminated the pregnancy if we knew about her condition?’. As a mom I said no, and because of that the lawyer said we didn’t have a case,” says Candice.
For now, they’re grateful for the support they have received and look forward to Bailey’s recovery.