Little Bailey is a walking miracle
Posted on 23 March 2022
When Candice and Hugo Tumber welcomed Bailey, their newborn baby girl, their joy was short-lived after learning she had the rare disorder, caudal regression syndrome (CRS).
Bailey Tumber, now aged three, was born with CRS, a rare congenital disorder that impairs the development of the lower (caudal) half of the body. CRS presents similarly to spina bifida, affecting the lower back and limbs, genitourinary tract, and gastrointestinal tract.
The family live in Barberton, Mpumalanga, and Bailey and her mom Candice spent months travelling to and from their home to Steve Biko Academic Hospital in Pretoria for treatment. But it wasn’t until Bailey was 18 months old that she was referred to paediatric orthopaedic surgeon Dr Jackie Mncina of Mediclinic Nelspruit for her bilateral clubfeet.
“During the examination, I discovered she was also suffering from congenital hip dysplasia [delayed development of the hip socket], with dislocation in the left hip,” he explains. Dr Mncina immediately commenced a treatment plan.
To correct her clubfeet, Dr Mncina used a process known as the Ponseti Technique. The first part of the treatment consists of weekly visits to gently manipulate the feet and fitting a casting to hold each foot in the corrected position. This allows it to gradually reshape.
“We performed four Ponseti manipulations and castings, then, during the fifth we performed a tenotomy – a percutaneous surgical procedure [passing through the skin] to lengthen the Achilles tendon. We then fitted the final cast, which stayed on for four weeks,” he says.
Once the cast was removed, Bailey was fitted with a foot abduction brace that she had to wear 23 hours per day for three months, and afterwards during the night and at nap times, until permanent correction of the clubfeet was achieved. Used correctly, the brace is 90% effective in preventing a relapse.
Open hip reduction surgery
Dr Mncina initially hoped an Ottobock hip flexion and abduction harness would correct Bailey’s hip dysplasia. When that failed, and due to her age (the harness is usually used in babies), Dr Mncina scheduled open hip reduction surgery. During the minimally invasive procedure, capsular plication was performed to reshape and tighten the hip capsule and stabilise the hip. The two-hour operation was a complete success. Post-surgery, Bailey was put into a plaster hip spica cast that extends from the torso to feet and holds the legs in the right position for healing.
Ongoing battle with CRS
While the causes of CRS aren’t yet well understood, treatment depends on the specific symptoms. Children with this complex disorder need ongoing physical therapy and may require additional surgeries to treat urological, spinal, cardiac, anal, or limb issues.
But despite all the challenges, Bailey seems to be beating the odds. Her dad Hugo recalls their total amazement when, on 23 December last year, Bailey climbed off her bed and walked to the kitchen – all on her own and without her walker.
While surgeries have corrected her orthopaedic deformities, intensive physiotherapy has been central to increasing her strength and ability to walk unaided. Bailey also needs ongoing care at Mediclinic to monitor her progression and assess her walking abilities. Follow-up X-rays are essential to identify possible recurrence of the dysplasia.
Dr Mncina concludes: “When I first saw her, she couldn’t stand at all. Today she’s walking. We are all very proud of Bailey and the team at Mediclinic Nelspruit who are with her on this amazing journey.”