Baby with caudal regression syndrome learns to walk

Posted on 10 June 2021

When Bailey Tumber was born with caudal regression syndrome, there was no hope of her being able to walk, sit or crawl. A few surgeries later, she’s proving everyone wrong.

Two-year-old Bailey Tumber was born with an extremely rare condition: caudal regression syndrome and bilateral clubfeet, but is now learning to walk after her last surgery.

The disorder impairs the development of the lower half of the body, such as the lower back and limbs, the genitourinary tract and gastrointestinal tract.

In Bailey’s condition in particular, there was a complete absence of the sacrum and coccyx with mildly dysmorphic appearance of the L3 to L5, spina bifida occulta T10-L1 and a thoracic spine otherwise morphologically normal.

Bailey’s orthopaedic surgeon at Mediclinic Nelspruit, Dr TJ Mncina, says the focus on Bailey’s operation was her bilateral clubfeet and congenital hip dysplasia with dislocation on the left hip.

“The process to get Bailey operated on was very challenging, but it was better to be treated earlier as children who are two years old want to walk and play with other kids,” says Dr Mncina.

“I started treating the clubfeet using ponseti serial manipulation, casting and tenotomy of the Achilles tendon, followed by use of a foot abduction brace. The process entails weekly non-operative feet manipulation and casting.”

A second surgery was done in November 2020 for congenital hip dysplasia. “It is always better when a child presents early where non-operative techniques can be applied first but unfortunately Bailey presented late at the age of two years,” says Dr Mncina.

“The clubfeet surgery took less than thirty minutes, and correcting the hip dysplasia took roughly 120 minutes. The surgical team comprised of the surgeon, surgical assistant, scrub nurse, anaesthetic, anaesthetic nurse and two floor nurses.”

Dr Mncina was only responsible for surgery pertaining to Bailey’s clubfeet and hip dysplasia; her spinal surgery was managed by another surgeon.

“Post-op, Bailey was admitted to high care for monitoring and pain control, but the surgery was considered an immediate success,” he says.

Dr Mncina added that rehabilitation plays a major role in ensuring the child is mobile and also making sure the child’s disability does not limit her potential in the community we live in.

Bailey’s mother Candice Tumber says Mediclinic was very helpful, from admission into the ward, checking up with us after the operation and making sure Bailey was as comfortable as possible.

Bailey has had three operations: two for tenotomy to correct her bilateral club feet and one for hip reduction.

“After Bailey’s recent open hip reduction surgery, she was put into spica casts, from the waist down. Two days post operation she amazed us all by flipping herself over and started crawling and standing with the spica cast on,” says Tumber.

Bailey was in a cast for a full 6 weeks. “It was a challenge holding her and changing her nappies but worth it in the end.”

“After her initial bilateral tenotomy for her club feet, she was given a pair of Dennis Brown shoes – boots with a bar to make her feet grow straight; she wore them for just under a year and her feet are perfectly straight.” She was given an ottobock harness to try correct her hip dysplasia but it did not help much, hence the operation, says Tumber.

When it comes to movement, Bailey cannot walk or stand on her own, says Tumber. “She was blessed with a walker from the Meyer Beukes warrior on wheels foundation. She uses her walker or hold on to furniture to get around.” Bailey has since started physiotherapy and Tumber is excited for the outcome.

“Bailey was born with three birth defects: spina bifida, bilateral club feet and hip dysplasia,” she says. “When she was born we were told she will never walk, sit or crawl and through it all she managed to move around with casts on.”

“Bailey’s fighting spirit and sheer determination gives everyone hope. She has touched a lot of hearts with her faith and determination. I believe my baby will walk one day through the grace of God.”

 



Published in Patients