Ministry of Health Manatū Hauora

Title: Newborn Metabolic Screening ProgrammeStella’s story

[Photograph of Stella as a baby]

[Text on screen of Stella’s birthdate] 26 August 2018

[Video of Stella and her parents sitting on floor inside house]

[Photograph of Stella as a baby]

Tanya - Stella’s Mother:

Had a really healthy pregnancy, had a dream labour and took her home and she was healthy as, and then when she was eight days old the midwife turned up.

On the way to our house she’d got a phone call from the specialists at Starship, the immunologists, that said look there’s something, there’s something wrong.

[Text on screen] At 10 days old Stella was diagnosed with Severe Combined Immune Deficiency (SCID).

Dr Shannon Brothers - Paediatric Immunologist:

Babies with Combined Immune Deficiency (SCID) are born without a functioning immune system. Although they appear healthy at birth, they go on to develop severe, persistent infections and die by a year of age.

[Text on screen over video of Stella in hospital] Stella had chemotherapy and a bone marrow transplant when she was four months old.

Justin - Stella’s father:

The medical side of the thing, watching your kid go through this, it’s not easy.

[Photograph and video of Stella in hospital with her parents]

Tanya:

Luckily at that point my Mum was actually up there with us, and so between the three of us one of us stayed awake and held her every single hour for that time that she was sick.

[Text on screen] She battled a serious infection.

[Video of Tanya attaching baby bottle with milk to pump and attaching pump to Stella’s feeding tube]

Tanya:
Because she got ulcers through transplant, she stopped eating, drinking her milk, and she hasn’t worked that one out yet so we’re still feeding her through the tube down her nose.

[Video of Justin following Stella as she walks and carrying Stella’s pump]

Tanya:

Might be easier if you push it.

Justin:

It’s a bit of a, bit of a worry if she falls over and hurts herself.

[Text on screen] Due to her compromised immunity Stella has not been able to interact with people other than her family.

[Video of Stella walking towards doll being held by her mother]

Tanya:

Who’s this? Is it Luna? You going to give her a cuddle?

[Video of doll which also has a feeding tube attached to its cheek]

Tanya:

We’ve got to get the tube out, teach her how to eat and soon enough she’ll be like every other kid, you’d never know, yeah.

[Video of Stella being held by Justin while Tanya puts Stella’s hat and coat on]

[Text on screen] Now, Stella’s natural immunity is improving.

[Video of Justin carrying Stella outside with Tanya, closing door behind them and Justin putting Stella in car seat in car]

Justin:

It’s nice that we can get to take her out a bit more, nice walking tracks and some parks where there’s not too many people.

Tanya:

It’s your kid’s life. For us if we hadn’t have found out early, we’d be in a completely different situation now and it’s life or death.

[Video of Stella walking outside on lawn, being picked up by Tanya]

Tanya:

And I know you think you’re not going to be that one because everyone thinks you’re not going to be the one in 100,000 or whatever but screw the statistics, when it comes down to it, we’re that one.

In our eyes If it wasn’t for the newborn screening, she may not have made it to her first birthday.

[Video of Justin, Tanya and Stella together outside]

Tanya:

That test is everything for us. It gave her the best chance of success in life.