"I love music. About three years ago, I started piano lessons. I even performed in a concert at my brother's school."
Ardriana Janse van Rensburg is 10 years old. She was born with Spina Bifida (SB), a neural tube defect. With little help and no counselling her parents decided not to give up on her, a decision that took great courage and determination. Today Ardriana is doing well and has even played the piano on a public stage.
It was only discovered at birth that Ardriana had SB, and it was then that her parents Drienie and Chris had to start making some major decisions.
"I am very glad we did not know before hand," Drienie and Chris said when they were interviewed at their home in Kempton Park, east of Johannesburg. They moved from Pretoria after Ardriana's birth out of necessity. "Our lives changed completely after Ardriana's birth," says Chris. "You must be strong when facing SB."
They explain that the only unit dedicated to SB in the country is at the Red Cross Children's Hospital at Groote Schuur in the Western Cape. They have had to fend for themselves from the moment Ardriana was born. Literally.
"When Ardriana was born and the doctors realised she was SB, they refused to touch her. Her back had to be closed within 48 hours. In the end, a volunteer did it. The neurosurgeon just stood at the door saying she would not lead a normal life and we should leave the spine open. She would have died within two weeks if we had.”
“We were on our own from the beginning and really, 10 years down the line, we still are. There are no SB support groups in South Africa and very few doctors that know enough about SB,” explains Chris. “The internet has been a huge resource for us.”
For the first three years of her life, Ardriana was in and out of hospital. Her first operation, to correct her feet, was when she was only two weeks old. At four weeks, she underwent the surgical procedure called shunting. Cerebral spinal fluid is the substance that baths and protects the brain and spinal cord. With SB, the fluid is not able to flow freely so it builds up inside the head causing pressure within the brain. To correct this, a shunt – a long, thin tube – is placed within the fluid-filled spaces in the brain to drain the fluid.
By the time, Ardriana had an operation relating to her bladder she had had enough of hospitals. ”When stopped at the hospital she would start crying. With the second bladder operation I had to go into theatre with her and hold her,” recalls Chris.
Today the Janse van Rensburgs spend less time in hospitals. “We still spend a fair amount of time in casualty. Ardriana has no feeling in her lower body so she can break her toe and not realise it. Her feet are particularly sensitive so she even wears takkies when she swims.”
SB has had a profound effect on the family life of the Janse van Rensburgs. Says Drienie, “Our son, who is now 16, found it very hard to cope with it in the beginning. We were always at the hospital. We realised the effect this was having on him when his grades dropped. We rectified the situation and he is fine today and very protective over his sister.”
And Chris and Drienie? “It has brought us closer. We have never blamed each other. We have stood together and accepted it. One parent cannot do this alone, the parents must stand together.”
Ardriana has also grown. She is less reserved and tearful. She loves music and about three years ago, she started piano lessons. She recently performed in a concert at her brother’s school. She would never have gone on stage before. The music has given her so much confidence.
Chris says proudly: “She cannot just go out and play like other children so this is something that is hers. Ardriana is a talented piano player and she also writes her own songs. And she is a very good scholar. She has had a brain scan and her brain has developed 100%.
“In the end we have all grown. It has changed our lives but there is so much good in our lives.