Indie with her mum and dad, big sister Havana and brother Riley.
Erin Booth is used to hearing bad news as a Police 105 call-taker, but nothing could prepare her for what doctors told her in March last year.
Erin’s daughter Indie, who turns 2 this month, was born with tuberous sclerosis (TSC) – tubers growing in her brain were causing seizures, but they were kept under control through medication. On March 11, 2022, Indie caught a virus and her temperature spiked causing a massive seizure that starved her brain of oxygen.
She was rushed to Wellington Hospital and later flown to Starship children’s hospital. After getting the results of an MRI, doctors delivered the worst news Erin and her partner, Eryn Dyke, could ever hear: “They said Indie had suffered a catastrophic brain injury and the swelling on her brain was so severe that she was not going to survive it. We were basically preparing to say goodbye to her.”
But, by some miracle, Erin says, over the next few days the swelling went down and Indie started breathing on her own. “Even the doctors said, ‘Your daughter is a miracle’.”
While the worst had passed for Erin and Eryn, they were told Indie may never eat, walk or talk again.
“Before this, she was amazing. She began crawling on Christmas Day [2021]. Her nickname was Dennis the Menace. She got into everything; she was such a little character. At the moment, she can’t really do much... Basically she is a shell of what she used to be.”
When life changed
Erin has worked for Police for six years and was a 105 call-taker in Kāpiti when Indie became unwell. She was also 20 weeks pregnant with her third child.
Police “were so good”, she says. “Basically, they said don’t worry about work. They let me use all my leave and extra special leave. They also did a wonderful fundraiser at the Kāpiti centre. They all dressed up and raised some money.
“We did have a Givealittle initially, when we were up at Starship, which was amazing because we basically wouldn't have been able to pay our bills without that and the fundraiser. Neither of us were working for three months.”
Erin’s father, Jon Booth, also works for Police. The Huntly constable’s colleagues were wonderfully supportive. “When all of this went down… his bosses basically said, ‘Don't even worry about it, Jon, just go, just leave’. All his workmates were messaging him and checking in and asking how Indie was, and they still do.”
Therapy offers help
Indie spent 81 nights in hospital. On May 31 she was finally back with her family, in their new home in Hamilton, after Erin and Eryn made the decision to move closer to family earlier that month.
A lot more has changed. Indie’s little brother, Riley, arrived and is now six months old, her dad is now her fulltime, paid carer and Erin returned to work a month ago taking 105 calls from home until a role at Hamilton’s File Management Centre opens. “I’m not going to lie, [going back to work] is tough. But, you know, you’ve just got to do what you’ve got to do to put food on the table.”
It has all been worth it though. Indie has come a long way thanks to her parents’ dedication and the help of Melbourne-based brain injury therapist Ian Hunter’s neuro-developmental therapy programme (NDTP).
“I found him through this place in Tauranga called the Brain Injured Children Trust (BICT),” Erin says.
“This guy's been doing it for like 40 years, so he's helped hundreds of kids... [but] it's incredibly expensive, like $700 an appointment. My grandparents paid for Indie’s first one [an initial consultation] and then the trust funded the second one for us.”
NDTP follows the belief that normal brain growth follows a structured, step-by-step process – a baby usually crawls before it walks – and that this progression should apply to a brain-injured child.
Ian has given Indie exercises to do, and Eryn takes her through the programme twice a day for up to an hour at a time.
Special moments
After the initial consultation by Skype, Ian visited Indie in person in late November. “He couldn't believe how much progress Indie had made in six weeks.
“Basically, she hadn't moved her arms, her legs, her face in eight months. She was just that out of it. She's on about eight different medications... But we pushed and managed to reduce them... Since we've done that, she's just made so much progress. She's moving her arms and her legs. You can just tell that it's made a huge difference already.
“When I blow raspberries on her face, she actually smiles at me and you can tell that she's still in there, which is really special,” Erin says through tears. “She is also making lots of sounds now. She's kind of trying to move her lips and it looks like she wants to communicate with me. Our main goal now is to try and help her learn to crawl again.”
BICT has sent them a therapy slide – Indie is placed face down on the slide and gravity helps her move forward. “The better and stronger she gets, the flatter you make the slide,” Erin says.
“We're just doing everything we can to help this little girl. We don’t want her to spend the rest of her life in a chair…
“The only thing that Indie has going for her at the moment is the fact that she's so young. And her brain has so much more developing to do and that's the hope that we're holding on to... She has survived for a reason.”
Trusted hands
In 2006, the Brain Injured Children Trust dreamt of making it possible for Kiwi families to do Ian Hunter’s neuro-developmental therapy programme at home. It started with five driven trustees who each contributed $10. The trust’s first big donation was $50,000 from the Tauranga Police CIB Auction. In 2007, BICT secured another $60,000 from the auction. In 2010, it secured a contract with Promotional Development Services, which brings in about $135,000 each year. The trust has grown from supporting three families in 2006 to more than 80.
