Meet Nicky

Daisy Myburgh, her husband Jansen, and their two boys, Max (3) and Nicky (2) travelled to Mauritius for a two-week holiday in July 2019. During the holiday, Nicky had an episode of intermittent vomiting, which lasted through a night and into a day, without showing any fever. Assuming it was just a bout of food poisoning, Daisy treated it as such, and they continued their vacation.

On their trip back home, both boys continued to have upset tummies, and once they landed back in Cape Town, Max came down with a cold which ran its course. However, Nicky did not get better. He complained that everything was “eina” and rubbed his legs all the time. When Nicky woke up from a nap, the tone in his voice made Daisy’s maternal instincts kick in immediately. Since it was Sunday, the Myburghs went straight to the emergency room of their local hospital. Nicky was examined and Daisy was given a script for antibiotics and sent home.

But Nicky was not getting any better! His sore legs persisted, and he became lethargic and weak. Daisy called an ambulance and off they went to a different hospital.

When they arrived, the paediatrician on call was very accommodating and helpful, and finally Daisy had a doctor who was willing to listen to her concerns. The paediatrician sent Nicky for an MRI, and the results showed inflammation of the lower spinal cord, a symptom which is consistent with Guillain-Barré syndrome (GBS). Treatment for GBS was IV Immunoglobulin Therapy (IVlg) which is a high dose of antibodies made from donor plasma, fed intravenously into Nicky to slow the process of paralysis by mopping up the harmful antibodies. However, Nicky needed to be intubated as he was slowly losing his ability to breathe and was referred to Red Cross War Memorial Children’s Hospital ICU. Nicky was transferred that very night, where a team of doctors and nurses awaited them. They got to work almost immediately as there was no time to lose.

“They (the doctors) asked me to wait in the waiting room,” Daisy recalls. “And you can imagine how hard it was leaving my Nicky that first time. With time, I got used to leaving him because I had to. But it never got any easier.”

Daisy recalls breaking down as soon as she walked through the door of the waiting room, where a stranger comforted her with a warm embrace and soft and kind words.

“That stranger was also a mother and a Red Cross veteran, whose son was in and out of the RCWMCH ICU since birth. She became my hospital friend, an ally and we would check on one another, and keep an eye on each other’s children when we needed a break.”

Nicky spent the next 11 days in ICU, with Daisy by his side. These 11 days were woven together in a blur of memory mixed with a dose of sleep deprivation. “Red Cross is an amazing and world-class institution, and the ICU runs like a well-oiled machine,” said Daisy. “Of course, with it being a teaching hospital, you get to see a lot of the learning process in action. One of the nurses continued to reassure and calm me and provided such an amazing level of care to Nicky.”

It became clear to Daisy that the doctors were between a diagnosis of entero-encephalitis and Guillaine-Barre Syndrome – both had its pros and cons. A mother’s worst nightmare!

“With the entero-encephalitis, you could be looking at potential brain damage, and damage that is not reversible, but perhaps a shorter recovery time if recovery was possible, and with the GBS you were looking at probable recovery but that could take up to a year or more to reach. And in the end, the diagnosis agreed on was Miller Fisher Syndrome – a variant of Guillaine Barre Syndrome, and Acute Flaccid Paralysis (what Nicky presented with) is a notifiable condition,” said Daisy.

At RCWMCH, the care and healing of the child are always put first. Doctors and nurses work tirelessly around the clock to save the life of the little one, while keeping parents as calm as possible. As soon as it was safe to do so, Nicky was discharged from RCWMCH and transferred to a private hospital for the rest of his in-hospital care.

It has been two years since Nicky’s diagnosis. Upon his discharge, Nicky had to learn how to sit, crawl and walk again. Recovery can take years, but Nicky surprised everyone when his recovery took only six months. His post-discharge recovery included three formal physiotherapy sessions per week with daily assistance from his parents.

“The thing about kids is that they will physio themselves too – like if they want to get somewhere or get to a toy that they want, they make a plan to do it!” says Daisy.

Daisy’s reality is she still suffers from a bit of PTSD, for which she went to therapy for. “Every time Nicky says his feet hurt or anything like that, I have a slight panic. The other day he said his legs were sore, and I was ready to bundle him into the car to drive straight to the emergency room, but it turned out to be a bout of pins and needles from kneeling too long.”

Today, Nicky is back to his super active self, and always swimming, jumping on the trampoline, riding his bike, and playing with his brother.

Red Cross War Memorial Children’s Hospital holds the hope of a healthy childhood, a parent’s faith in healing, and a medical professional’s gift of prevention and cure. Through the generous donations of our donors, the Children’s Hospital Trust can continue to raise funds to equip the Emergency Centre with state-of-the-art medical equipment, needed in life-saving medical emergencies. We are only R3 million away from our goal.

Help us reach our goal because Every Little One Counts.