Toddler from Trichardt’s medical condition leaves him with no control over his bladder and bowels
Trichardt toddler Ruhandré (2) has no control over his bladder or bowel movement. He was born with lumbosacral myelomeningocele (MMC) on December 4, 2021.
Born with lumbosacral myelomeningocele (MMC) and bilateral club feet, not much hope has been given to the nearly two-year-old Ruhandré van Dyk’s parents, Johannes Ruben (JR) and Lezette, that he would ever be able to walk.
Neither scans nor doctor’s appointments had picked up Ruhandré’s developmental issues, and on the day of his birth on December 4, 2021, his parents were greeted with devastating news.
“I had a healthy pregnancy with no complications,” said Lezette.
On the day of his delivery at Evander Hospital, her water was broken and the fluid was black.
“I was told that something was wrong, the baby was in distress, and that I needed an emergency c-section.”
Lezette explained at first she was shocked that she had delivered a baby boy as they were expecting a baby girl.
“Then everybody went quiet. I began panicking because everyone had gone from happy to quiet and not saying anything,” said Lezette.
She said that Ruhandré was brought to her and very quickly taken away.
During her recovery, doctors explained there was a medical problem with him and due to his condition, he would be referred to a high-care hospital.
Lezette came to learn that Ruhandré’s spine had grown outside his skin.
“Within 72 hours of his life we were transferred to Steve Biko Hospital and he had his emergency surgery to his spine,” said Lezette.
Ruhandré would end up spending a month in the hospital for treatment of the closing up of the spine under his skin.
“This all happened during Covid-19. We only got to see him one hour, per parent, per day.”
Because of his club feet, Ruhandré also had to get weekly, and then monthly casts fitted. He was then put on sprints which Lezette says he does not like.
“He has no movement or activity in his lower body. Doctors had told me he would never be able to walk and would forever be like he is now,” said Lezette.
He got his first wheelchair when he turned one, but again Lezette says he doesn’t like to use this and prefers to crawl from his upper body to get around.
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“He is fast and active when on the ground, I think he feels the chair restricts him with movement,” said Lezette.
Mentally he is perfectly well, however, Ruhandré has no control over his bladder or bowel movements.
“The moment he drinks something it comes straight out. He is continuously drinking on a bottle,” said Lezette.
She explained with the disability grant and together with her husband’s salary, they cannot make ends meet every month due to the amount of money spent on diapers.
She has resorted to using cheap nappies as other brands are too expensive. The family also relies on food parcels. Ruhandré is on Oxyrest medication for his overactive bladder.
“The doctor’s next step is to put Botox into his bladder and if that does not work the last resort would be a permanent catheter.
“It is not easy. It is not fun for him to always be soaking wet, 24 hours a day. Financially it is heavy, it is just diapers upon diapers. We go through at least 300 nappies a month and when he has a bug or upset stomach it is more,” said Lezette.
She said because his bottom is so close to the scarring where he had his operation she cannot leave his nappies on long cause it would cause burns.
“Before we learned of Ruhandré’s medical condition we stayed in Secunda and were okay financially.
“However, with all the procedures that needed to be done on him, we moved to Pretoria. When it came to him only seeing the doctors monthly we decided to return here where we have a better family support structure,” said Lezette.
Currently, they stay in a rented flat at Trichardtsfontein Dam, with Ruhandré’s two sisters Lucinda (6) and Bayleigh (4).
Lezette said she is not asking for financial help, but needs help with making his life a bit more comfortable, as a special needs child, when it comes to his size 13kg plus nappies.
Transport for his visits to Steve Biko Hospital at times is a challenge and Lezette depends on family to help take her to Evander Hospital for his physiotherapy and medication.
JR, Ruhandré’s father commutes to work on a bicycle that was donated to him as their vehicle is broken down.
Lezette is calling out to anyone who has to visit Steve Biko Hospital and Evander Hospital monthly for help with a lift for her and Ruhandré.
When describing Ruhandré as a toddler Lezette said, “Boys will be boys, and they don’t need their legs to be naughty,” she said laughing.
She said he is swift when he is on the ground and in a blink of an eye he moves from one side of the room to the other.
“He is also very alert and talkative and enjoys playing with his sisters and being around them,” said Lezette.
If you can help with a lift to either hospital or want to help with his nappies WhatsApp Lezette on 065 914 1300.
