Suede's Story — The Meningitis Foundation

It was the 15th of February 2015 when Suede, who was just two and a half months old, fell seriously ill.

"Suede’s mum, Ashleigh, shares how a normal day quickly turned into a nightmare.

Ashleigh noticed Suede's strange behaviour on what was meant to be her daughter’s first day of school. “I’d put Suede in his play gym and noticed he wasn’t really responding; he was very sleepy and wouldn’t wake up for his bottle. It was like he was looking right through me,” Ashleigh recalled.

Concerned, she rushed him to the hospital in New Plymouth, where he was initially diagnosed with bronchitis. Suede was discharged two days later, but his symptoms persisted, and his condition deteriorated rapidly. “By that time, he was really lifeless and quite limp, but he didn’t have any rashes. It was just like no one was home.”

Ashleigh and her mother took Suede back to the hospital that same day, where he was kept overnight.

During his stay, Suede had a seizure and spiked a fever, revealing the devastating news: Suede had meningitis, a bacterial and viral infection affecting his brain.

“We were in there nearly two weeks, but it felt like forever.” Ashleigh remembers. Despite receiving a number of medications, including penicillin, Suede showed no signs of improvement and suffered a right sided focal second seizure. It was then that Suede was flown to Starship. Once at Starship Hospital, Ashleigh and her family felt better.

“Although Suede’s condition was yet to improve, the care, knowledge, and the surroundings felt more promising for us,” says Ashleigh. While at Starship, Suede suffered several more seizures and fell unconscious for a few days. The doctors warned Ashleigh to prepare for the worst, but she refused to give up.

Ashleigh spent countless hours by Suede's side, waiting for any sign that he might wake up. One night while sitting beside him watching the Jungle Book on the hospital room TV, she turned to check on him, expecting the same stillness. But this time, Suede's eyes were open, staring right at her. In that instant, Ashleigh knew Suede was back.

Suede battled through four weeks of intensive antibiotic treatment, struggling to regain basic functions like sitting up due to the febrile right sided focal seizure, which affected his right arm and leg. Ashleigh says she had no idea of the disease beforehand, only that he had received his two-month vaccinations prior.

“He didn’t get a rash and thankfully lost no limbs, but I remember there were children in the same wards at Starship who had lost limbs. It was incredibly sad.”

Reflecting on the experience, Ashleigh feels her initial lack of knowledge affected her confidence and ability to speak up on her son’s behalf. Throughout their stay, Ashleigh found strength in prayer, leaning on the mana of her ancestors and making an effort to provide a safe and familiar space for Suede. By personalising each of their hospital rooms, playing familiar music and adding colourful elements, Ashleigh created a space she felt would keep Suede grounded and supported during the challenging time.

By the end of their stay, Ashleigh felt more knowledgeable about meningitis and its effects, as well as the care Suede required. After two months, returning home should have been a relief, but it brought its own set of challenges. The trauma of the experience left Ashleigh grappling with anxiety and emotional turmoil. “I just went on a downward spiral,” she admitted, struggling to cope with the aftermath of Suede’s illness while trying to care for her other children. “There wasn’t time for me to process any of it.”

Ashleigh received a few phone call check-ups from medical teams, but six months following the ordeal, all support had stopped. The lack of aftercare was something Ashleigh found incredible disappointing. It’s only recently that she has started to notice how much meningitis has affected Suede. Now an outgoing, healthy nine-year-old, Suede faces behavioural challenges and struggles to understand why he’s different from other children.

Determined to find support for him, Ashleigh reached out to various organisations and was directed to contact The Meningitis Foundation Aotearoa New Zealand for guidance and resources. “I reached out because I felt there should be some sort of support for Suede, support outside of simply visiting the doctors for a check-up that ultimately comes at a cost to us.”

Ashleigh emphasises the need for support groups that can help children understand, in an appropriate way for their age, why they might feel different from others. Lamenting the lack of ongoing support for families affected by meningitis, she pleads for more awareness and support, believing it’s crucial to have better access to information and resources, particularly in regional or rural parts of New Zealand, where knowledge of meningitis and it’s affects may be less common, leaving families without the benefit of shared experiences or local support networks.

To those facing similar battles, Ashleigh urges them to trust their parental instinct.

“Your gut instinct as a mother, your maternal instinct, follow that. That’s what keeps you strong as a parent. Our babies feed off our mana, so if we lose faith, they lose strength. Stay strong, ask questions. Whatever you think, don’t be afraid to say it.”