A Nelson family is fighting to make sure their daughter can reach her full potential after she was diagnosed with cerebral palsy as a result of a brain injury suffered during pregnancy.
When Fiadh was born, she weighed just 620 grams — her twin sister Meabh weighed 820 grams. Fiadh was only a little bigger than mum Anna Wallace's hand.
She knew there was some worry Fiadh would be the smaller twin, but not much else.
Anna had gone into labour at only 26 weeks. She was flown from hospital in Nelson to Wellington to undergo scans, but would ultimately undergo an emergency C-section.
"Very quickly" afterwards a small army of health workers entered the room – with each baby having a team dedicated to their care. The twins' father, Luke Bayer, estimated there were around 25 people in the room.
The couple and their older daughter would stay at the Ronald McDonald House for about six months so they could be close to the babies while in the NICU while they underwent countless procedures, tests and treatments.
"Both girls are likely going to have scar tissue on their heels for the rest of their lives because of all the blood tests," Luke said.
Describing the time the twins were in hospital, he said: "It's not great for your mental health. You're trying to be in there for 10 hours a day, 12 hours a day, reading books and stuff. But you're in that artificial light or a dark room with alarms going off all the time.
"It's super sensory. You've got 10 babies, eight babies in a room, and they're all probably in the position where they're all beeping.
"It's fairly full on in there, and then when something happens, which was quite often for Fiadh, nurses and doctors rushed from everywhere."
After five months in the NICU, one of the lead doctors came to talk to them. "We learnt, sort of at the start, that whenever the head honcho doctors wanted to have a chat to see how things were going, there's always gonna be some sort of bad news," Luke said.
They were told Fiadh had suffered brain bleeds before delivery due to undiagnosed Twin-to-Twin Transfusion Syndrome — a rare complication affecting 10-15% of identical twin pregnancies. The condition means one twin receives more nutrients than the other. In this case, Meabh had received more than Fiadh.
"It meant that probably the rest of their organs were pretty much shut," Anna said.
Fiadh was diagnosed with spastic quadriplegia cerebral palsy, profound hearing loss, reflux and chronic lung disease.
Luke said Meabh was growing healthily. But for Fidah, "you just never quite knew what sort of feedback we're going to get or what tests she needed".
'Cheeky' toddler
Now, at two-years-old, Fiadh has become a "cheeky" toddler full of joy, always smiling and laughing at Meabh and her older sister who is now four.
"She's very chilled and she really loves people. I think that's her superpower as she loves to catch people's eyes and give them the biggest smile," Anna said.
"When her sisters are being cheeky and playful with her, she's just delighted. The kids love racing around in circles around the house, and every time they come past, she absolutely squeals with joy."
Her parents have had to adjust to a new schedule, where Fiadh requires full-time care.
She can't sit or crawl yet, and is bottle fed once every two hours, only managing to eat a small amount of puree, often vomiting. She is also immunocompromised and was recently in hospital for a chest infection.
She needs to attend daily appointments that include physical therapy, eye checks, orthopaedics, dietitians, speech and language therapy and audiology. Fiadh is due to receive a cochlear implant next month.
"I was in and out of town every other day with appointments. And it's still like that now," Anna said.
"We're fairly relentless with physio. I'd say we need an operations person just to coordinate all that," Luke joked.
Fiadh undergoes physiotherapy thanks to the help of wiredON development, which provides in-person physio sessions and assists the Wallaces in conducting therapy with Fiadh at home. But the level of treatment available in New Zealand isn't enough to help her.
After reading an article about a girl in Christchurch, the couple discovered that a form of Dynamic Movement Intervention was being offered at the Gold Coast-based Movement Centre. DMI is a form of therapy designed to develop motor skills in children, enabling them to improve postural control and make adjustments. It helps to stimulate movement and build neural pathways.
They described the therapy as "intensive" and said it involved 15 physio sessions a week – three a day.
At 15 months, Fiadh had already completed three weeks of treatment, described by her parents as "life-changing".
Travel for treatment
The time-sensitive and early interventions were not publicly funded, "but are [Fiadh's] best chance at progress".
The couple set up a Givealittle to help raise money so they can travel and get Fiadh the treatment. Their wider family has also built chairs and made ceramics to sell to help fund the treatment. Artist Joe Tyson has also been selling paintings to raise money.
At the time of writing, the family had raised over $15,000, which the couple described as "humbling".
"Just to know how supported we are and know that people have managed to find some money in a tough living situation, that's just amazing," Anna said.
The couple are hoping physio will allow Fiadh to sit up without assistance.
"We've got a bottle of bubbles set aside for when Fiadh sits up on her own," Anna said.
The couple said it was highly likely that their daughter would be in a wheelchair, but hoped treatment could give her a chance to develop strength, communication and independence.
They said beyond her survival, "We just want her to have a sense that she feels happy and that she can be engaged with people in the community."
"Just give her every chance," Luke said. "Whether that is staring at her or watching from a distance, just every chance possible."
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