A mum’s ordeal – Lessons to learn about RHD
26 September, 2022, 9:00 pm
A Pregnant mother always hopes that her child is born healthy and lives a long life.
When Erini Tokarua gave birth to her eldest child Walter Tokarua 13 years ago, she never imagined that her child would later be diagnosed with rheumatic heart disease.
Ms Tokarua remembers the morning when her five-year-old son woke up and couldn’t walk.
“The day before he had been running around but that’s how drastic things can be for some children,” the 38-year-old said.
“He was crying and I couldn’t understand why and I thought he was just being a baby but then I noticed his knees were swollen and he said that he felt like standing on needles.
“I had to take him to the health centre that morning and it was there that I saw a poster of a stick figure of a child, with arrows pointing to body parts, everything that my son was going through.
“When the nurse asked, I didn’t know what to say because he had been normal the previous day and so I told her I thought my child had what was on the poster. Young Walter was been diagnosed with a mild form of RHD.
“All I heard was heart disease, I didn’t even hear the rheumatic, I was lost and all I was told was that my son needed injections.
“It wasn’t easy to get two injections for a five year old and I had to hold him down.”
For three whole years, Ms Tokarua kept her son indoors fearing that her son might die if he was too exposed.
“I didn’t do any research as a mom; I was too scared to find out the unknown.
“One day I got a call from the RHD program where this lady invited us to a group session.
“It didn’t take me the first support group to be able to understand the disease, I came in new and was still in shock.
“I was treating my child like he was at a severe stage because when you hear the word heart you just think the worst.”
With a good support system, Walter gained a sense of confidence and believed that he wasn’t burdened by the disease.
“He didn’t quite feel stigmatised and is not ashamed to tell people he was living with RHD.
“He even goes and enrolls himself into anything, if it’s a sporting even he would inform them that he has RHD and they would tell him no you can’t participate in rugby.
“He would tell them that it’s okay and then ask me to write a letter or the doctor to say it’s safe for him to play.
“Now he even takes himself to get his injections and he’ll be going there for at least 10 years.”
She said her son would do anything for RHD and was a little advocate willing to share his story.