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In the first 48 hours of life, blood from newborn New Zealand babies is taken and tested. Most parents will never hear back. For others, it’s life-changing.
Performed 48 hours after birth, it’s a medical procedure patients are unlikely to ever recall having.
The heel prick test is administered by midwives, who draw droplets of blood from a newborn baby’s heel, smear them on a sample card and send to Auckland Hospital’s LabPLUS testing centre.
Dr Dianne Webster, Clinical Lead for the Newborn Metabolic Screening Programme (NMSP), says “there are about 60,000 babies a year born in New Zealand and we pretty well screen all of them.”
The newborn blood test isn’t mandatory, but uptake is high. Dr Webster says the programme is highly regarded internationally and New Zealand would be one of the few countries to boast 100% coverage nationwide.
Initially called the Guthrie test, after its American creator, the heel prick test was introduced here, 50 years ago, by New Zealand’s only geneticist at the time, Professor Arthur Veale.
As Frank Film’s ‘Changing South’ discovers, most parents will never hear back once the blood sample has been processed. Those who do, will be told their baby may have a rare and possibly life-threatening condition.
For first-time parents, Justin and Tanya, the news came as a huge shock.
The heel prick test revealed their daughter, Stella, had Severe Combined Immune Deficiency (SCID), a condition which the NMSP only began screening for a year earlier. Stella was the first child to be diagnosed with SCID since testing was introduced.
Paediatric Immunologist, Dr Shannon Brothers, says “although babies appear healthy at birth, they go on to develop severe, persistent infections and die by a year old.”
Following diagnosis, Stella underwent chemotherapy and a bone marrow transplant when she was four months old.
When Frank Film met Stella her immunity was improving and the plucky 13-month-old toddler was able to leave the home environment to visit parks and open spaces, avoiding close contact with others.
Other conditions the programme tests for include cystic fibrosis, congenital adrenal hyperplasia, phenylketonuria, and congenital hypothyroidism.
Stella’s mother, Tanya, says “everyone thinks you’re not going to be that one in 100,000, but … when it comes down to it, we’re that one.”
She says if it wasn’t for newborn screening Stella may not have made it to her first birthday.
“That test is everything for us.”