12-Week Old Taonga Face of 2017 Countdown Kids Hospital Appeal

12-week old Taonga Peita is a very precious child who has a range of medical complications, spent two and a half weeks in Whangarei Hospital’s Specialist Care Baby Unit (SCBU) after he was born prematurely on May 16 this year, and continues to rely upon oxygen 24/7.

Taonga is the Northland face of the 2017 Countdown Kids Hospital Appeal and as the Countdown Kids Hospital Appeal launched August 11 at the Child Health Centre at Whangarei Hospital, Taonga’s mum Miranda Shackell shared the story of Taonga’s life so far.

“I was working as a special education needs coordinator at Whangarei Boys High School and, I went on maternity leave on the Friday, and the following Tuesday I was having a nap then woke up with pain on one side of my puku.”

Miranda already had two boys’ aged under three when she was expecting Taonga, and knew she needed support when the pain arrived unexpectedly – even though she wasn’t expecting Taonga to arrive for another three weeks.

“Pain was spreading across my stomach; I was having what turned out to be contractions en route to hospital.” Taonga was in a breech position, so Miranda and her doctors opted for an emergency Caesarean section.  

During her pregnancy, Miranda and her partner had been informed there was high risk that Taonga might have Down Syndrome. “While we were curious as to whether or not he had Down Syndrome, we didn't want to risk the diagnostic testing because we were in love with him already, regardless of how many copies of chromosome 21 he had,” Miranda recalled.

When he emerged on May 17, Taonga cried for 30-secs and then developed respiratory distress. “He went into SCBU within 40 minutes of being born.  Three of us had had Caesarean sections that day. I felt so jealous of other mums’ babies crying.”

A diagnosis of Down Syndrome was confirmed caused by Trisomy 21 which is when an extra chromosome (chromosome 21) originates in the development of either the sperm or the egg. 

In hospital for two and a half weeks, Miranda recalls having excellent care from the SCBU doctors and nurses. “I can’t rate the staff there highly enough. They’re passionate people. The first few days they had 14 kids at one stage when they have capacity of 10. None of the staff seemed stroppy or stressed. They were amazing, all of them.”

Miranda recalled lots of upset in the first week and crying every day, for example when Taonga was struggling to latch because a snotty nose made breathing difficult.

After all she’d been through, Miranda was then given some hard news: Taonga had been diagnosed with transient myeloproliferative disorder (TMD), which can sometimes lead to acute myeloid leukaemia in babies with Down Syndrome.  Taonga also has a small hole in his heart.

“When they said TMD has the potential to become leukaemia, I felt like I was hit by a bus. The doctor came back a few hours later to reassure me it wasn’t as bad as it sounded. But for me, you hear leukaemia and you see a coffin.”

When mum and baby were ready to leave hospital, Miranda and her carers worked on a discharge plan for Taonga. “I learned about CPR and how much oxygen flow he would need. The plan was to listen to what they said and just do it. It was a lot to absorb.”

After overcoming the first set of hurdles, the next complication was keeping baby Taonga safe at home. Taonga’s oxygen supply could not be near a naked flame, which made it very difficult to keep Taonga with the family as the family home was warmed by an open fire.  

“I rang the council, Work & Income and Healthy Homes Northland to see if they would help us [pay to insulate the cold home.] I didn’t want Taonga banished to the bedroom. Finally I rang Hubands Energy here in Whangarei, I told them our story. Hubands prioritised us and when there was a cancellation on their waiting list they squeezed us in.”

At the moment Taonga is on full time oxygen, and a regimen of medication including vitamins and minerals.

Miranda said the reason it’s important to support Taonga and other Countdown Kids is “Because potentially we wouldn’t be having this conversation otherwise.”

Miranda happily recalled all the ways in which the Okara and Regent branches of the supermarket have made her daily workload of teaching, parenting and carefully monitoring medication easier by arranging delivery and pickup of her grocery shopping.

“The other thing I like about Countdown is the free fruit for kids. It’s healthy and it’s free.”

Over 7500 children and babies are admitted to one of the four Northland hospitals each year. Funds raised by the Countdown Kids Hospital Appeal help Northland DHB Maternal and Child Health Services afford items on a ‘wish list,’ and the value of those items across the first nine years was $677,043.  

Last year, donations to children’s care in Northland hospitals via Countdown raised $96,054.

The Countdown Kids appeal has helped Northland DHB provide families with travel incubators, apnoea monitors, scanners, breast pumps, an electronic hoist with scales, humidifiers, La-Z-Boy chairs and a range of medical equipment across the SCBU, Maternity Services and other departments.

This year’s Countdown Kids Hospital Appeal runs from 7 August – 29 October.

Taonga Peita – 12 weeks old – Northland Face of 2017 Countdown Kids Hospital Appeal (Photo - Liz Inch)

Taonga with his three year old brother Dallas Peita (Photo - Liz Inch)

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