Normal life after shock diagnosis
When Tanya Pryde and Justin Orpwood took their firstborn daughter home shortly after she was born on August 26, 2018, they were on cloud nine.
After an uncomplicated pregnancy and birth, baby Stella Orpwood was the epitome of a happy and healthy newborn.
Little did they expect their world would come to a standstill just days later when Stella received a devastating diagnosis.
The newborn metabolic screening programme, also called the “heel-prick test” and usually done when a newborn is just a couple of days old, had picked up an abnormality.
Stella had severe combined immune deficiency (SCID), a genetic condition that essentially meant she had no immune system. SCID is estimated to affect one in 50,000 to 60,000 babies, which means about only one baby a year in New Zealand is diagnosed with it. Stella was the first baby in the country to have SCID identified through the heel-prick test.
If not treated, most babies with SCID do not survive past their first birthday.
The diagnosis was “absolutely devastating”, Pryde said. “It was just horrendous. And so hard to comprehend, because you are holding this perfectly healthy-looking baby with nothing wrong, and to know she’s just like a cold away from the worst happening … it just shook us to our core.”
Immediately, everything was different. To protect Stella from infection, the family went into isolation at home. Stella got to meet her grandparents, but the rest of the whānau and friends could only see her through a window.
Stella had to receive regular immunoglobulin injections, a product made from donated plasma that provides antibodies to fight off infection. Pryde said the injections “kept Stella alive” while they were waiting for her to grow before starting treatment.
When Stella was 3 months old, she was flown to Starship Hospital in Auckland where she underwent chemotherapy and a bone marrow transplant. She had a feeding tube inserted after developing painful ulcers in her mouth due to the treatment, and battled a serious infection while in hospital.
Pryde stayed with Stella in hospital for four months before taking her home to Christchurch, where their life of isolation continued. Even the slightest infection could have devastating consequences.
Pryde said when Covid hit and everyone had to go into lockdown, it was almost “validating” as everyone else suddenly understood what they had been living with for years. “There was also all of a sudden all these resources available that weren’t previously available for people that were in isolation, like you could suddenly do doctor’s appointments on Zoom and order everything online.”
“Before Covid, we were always walking around with masks in public and people would certainly look at us. Suddenly everyone was wearing masks and washing their hands and wiping down their groceries – things we had always been doing.”
Stella’s road to recovery was slow but steady. She slowly built up immunity, had her feeding tube removed just before her second birthday, and was strong enough to go to kindergarten by the time she turned 4.
Pryde and Orpwood welcomed their second baby girl, Aster, in 2022.
Today, 5-year-old Stella is almost fully recovered. Pryde said she has a few long-term effects from her ordeal, like being sensitive to radiation exposure and having challenges eating certain foods, but she is as happy as can be. “She is amazing. I think the whole world deserves to see how amazing she is.”
Pryde said she was overwhelmingly grateful for the people who donated blood that helped save Stella’s life. “She genuinely wouldn’t be here if it weren’t for those blood products. The whole thing has been so eye-opening for us, because I think most people think donated blood is just used for people who are, for example, in car crashes and lose a lot of blood. But no, it is used in so many different ways and saves the lives of children like Stella.”
Josh Bankers, acting chief executive at New Zealand Blood Service, said they refer to plasma as “liquid gold” as it can be turned into 11 different lifesaving treatments and used for more than 50 different illnesses.
“It’s the gold we all carry with us in our blood, and for thousands of New Zealanders it can mean the difference between life and death. We need more people to understand what plasma is and why it’s so important,” Bankers said.
New Zealand’s plasma supply is “at a tipping point” with demand growing more than 10% every year. “We need to collect just over 2100 plasma donations every week to keep up with the current demand, but we’re falling short by about 250 donations every week.”
Only about 4% of the eligible population in New Zealand are blood and plasma donors, so the growing demand can easily be met if everyone who was eligible donated.
A plasma donation takes about 45 minutes, is pain free, and can be done every two weeks.
National blood donor week runs from today to Sunday. To book an appointment, download the NZ Blood Service Donor app, visit nzblood.co.nz or call 0800 448 325.