When Sara was pregnant with her second child, she was told her unborn baby, Kezia, had spina bifida. “I felt both upset and challenged by the fact that I was going to have a baby with spina bifida. But my husband and I made the joint decision that we would face this journey together.”
What is spina bifida?
Spina bifida is a type of neural tube defect, which occurs when a baby’s spine and spinal cord don’t form properly during the first month of pregnancy. The condition can cause a variety of symptoms depending on its severity.
Kezia’s early childhood
Kezia was born in January 2002, with one of the most serious and severe types of spina bifida called myelomeningocele, which can affect the bladder and bowel, along with cognitive impairment and learning difficulties. After a six-week stay in hospital, Sara and her new baby were finally able to come home.
As a result of the spina bifida and nerve damage, Kezia had a ‘patulous (loose or open) anus’, which meant that the muscles in her anus weren’t tight enough, resulting in faecal incontinence. Sara recalls, “I would have to keep her on stool softener to keep the poo soft enough because she would get very constipated due to her bowel not working properly. Sometimes this caused the poo to become too soft, causing regular faecal incontinence as she had no control over her sphincter or anus opening.”
Kezia also needed to be catheterised up to five times per day and would get frequent urinary tract infections. Sara needed to monitor her symptoms closely, often looking for signs of fever and cloudy urine, with frequent visits to the doctor’s office.
School life
When Kezia reached school age, she was accepted into a special development school that could support her needs.
“Kezia was too young to do her own catheters then, so I trained the district nurses to do her catheters in her morning tea and lunch breaks. The nurses had never catheterised a child before, so it was a learning curve for everyone.”
Growing up with spina bifida
Growing up, Kezia had regular appointments with a team of health professionals. This included seeing a urologist and continence nurse every 3-6 months, along with a paediatrician to monitor her progress.
She also underwent numerous orthopaedic surgeries to assist with ‘straightening her ankles and feet’. “Her spinal cord is tethered and with tethering the cord doesn’t stretch up and down like it would you and me.
"By age 11, Kezia learnt how to do her own catheters with education including children’s books specific to her needs and gentle training from myself and the nurses that helped her at school. It took many years for Kezia to gain the skills and took a lot of patience and perseverance from me. I was a bit pushy at times.”
She also switched to a transanal irrigation system, which helped with her bowel problems and faecal incontinence. Transanal irrigation is a simple procedure where water is gently pumped into the bowel to assist with the evacuation of faeces. “Kezia went from having poos every hour and having an accident every time she giggled or jumped on the trampoline, to now not opening her bowels for 24 to 48 hours and being (mostly) free of faecal incontinence. I’m not saying she never has an accident now and again, but it is so much better managed with this routine.”
Thriving as an adult
22 years later, Kezia is now thriving, and Sarah could not be prouder. While Kezia is cognitively impaired and has some mobility challenges, it is not as severe as expected. “We were told she would never talk or walk. She can now walk short distances and has improved her communication skills and is confident enough to speak her mind. Kezia has friends, a boyfriend and genuinely enjoys life.”
After successfully completing an interview process, Kezia now volunteers as part of an activity department at an aged care facility. She also enjoys arts and crafts, volunteers at an art gallery once a month, and regularly cooks a meal for her family.
Kezia continues to have the support of her healthcare team, with visits to her doctor every three months, her urology team once a year and her neurosurgeon and cardiologist every two years.
Working as a continence nurse
After working as a nurse in different medical settings around the world, Sara began training to be a nurse continence specialist (continence consultant) when Kezia was 16. " I love working one on one with families and children to make their world better. I enjoy helping them to navigate it all, because it can be very daunting.”
Sara now runs her own business called ‘Continence Continuity’ which focuses on supporting her clients with continuity of continence care.
“I’ve been there as a parent, when my child has done a poo, and I can smell it from across the room and felt mortified about what other people must think; that my child should be old enough to not do a poo in public.”
“It’s a rollercoaster ride for many parents. I feel their pain and anxiety through it all. I offer reassurance first and then gently guide them and offer recommendations, always keeping in mind that not everyone’s journey is the same, and we all deal with things differently.”
Support and advice for other parents
One of the biggest support avenues for Sara during this journey was the ‘Spina Bifida Support Victoria’ Facebook group, where she found solace in meeting other mums and dads who have children with the condition.
For those who have a child with spina bifida or any child that is experiencing urinary or faecal incontinence, Sara’s advice to parents is “be kind to yourself. So much of the time, as parents, we want things fixed, we want it sorted out today. But try not to beat yourself up. It may take baby steps to navigate everything as it can be very overwhelming. You can’t wave a magic wand and have it all fixed in one day. It all takes time, patience and energy.”
Read more from Bridge: https://issuu.com/continence.org.au