Grateful thanks to all the families who so graciously and kindly share their difficult stories with us. We wish them all the very best as they continue on their health journeys.
Matthew 
Lauren 
Tamsin 
Kobe
Matthew’s Story
Their kind donation simply said… “From Matthew, Charlie, and Owen, who have managed to rack up zero frequent flyer miles in your hallways two years in a row.” With a family of three boys you might expect a few bumps and scrapes over time, however it’s never good to hear that children are frequent flyers to the children’s hospital, or to see familiar faces on the ward week after week, year after year. Sadly, like many others, Shannon and her boys are very familiar with Wellington Regional Children’s Hospital.
It began with their oldest Charlie, when bouts of RSV and bronchiolitis had him hospitalised on two occasions. But, as Shannon explained, with hindsight this was just good preparation for Matthew’s difficult health journey. Baby Matthew had things to do and places to be, arriving in the world a frightening 11 weeks early. Matthew spent three worrying months in the care of the Neonatal Intensive Care Unit team. After juggling the demands of young children along with time spent in hospital by their critically ill baby’s bedside, the family was thrilled when they could finally take their youngest home.
However, less than 24 hours after being discharged, Shannon found her wee boy limp and blue from lack of oxygen. Matthew had stopped breathing and had to be resuscitated by his dad. Rushed back in to hospital he would spend a further month being cared for in the NICU until his lungs stabilised.
“He had a hard time regulating his breathing and was in and out of the Children’s Hospital for the first two and a half years of his life,” explains Shannon. As a prem baby with a very rough start, Matthew still heads back to the Children’s Hospital for follow-up visits, but they are fewer and farther between, and much less scary for his mum and dad than overnight admissions. “We’re very grateful for the care our boys have received (and the care us stressed out parents received, too!) and Owen and Charlie were always grateful for the outdoor play area when they came to visit.”
Lauren’s Story
The very first thing you notice about little Lauren is a smile that radiates pure joy! But born prematurely, Lauren has had a rough start to life with frequent seizure-like episodes that specialists struggled to diagnose. Eventually identified as Sandifer’s Syndrome she was unable to feed so was fitted with a Mic-Key Button, which is a permanent port into her tummy through which she can be tube fed.
With frequent admissions to the children’s hospital for ongoing respiratory infections that leave her dangerously low in oxygen, her family must be constantly vigilant. Mum Rachel describes terrifying moments when her wee girl would simply stop breathing altogether.
“Although she is now on a bipap machine we have been told that it’s possible she will have an event that she won’t recover from, and we carry this in the back of our minds constantly.” As if her needs weren’t complex enough, Lauren is also profoundly deaf and has received two cochlear implants.
As a frequent-flyer to the children’s hospital, Lauren’s parents know first-hand how much of a difference the New Children’s Hospital will make to the thousands of sick babies, children and young adults admitted every year.
Tamsin’s Story
A cancer diagnosis is something no parent ever wants to hear. For Tamsin the diagnosis of leukaemia came like a bolt out of the blue and meant a whirlwind of tests, scans and long term treatment. Tamsin’s mum Hayleigh told us, “It’s something you never imagine you will hear, and at such a terrifying time we were extremely grateful for the hospital and the team right from the moment we arrived. With such a scary journey ahead being told we were in for the long haul was daunting, but Tamsin was snuggled into some nice warm PJs provided by the hospital for the night, a small comfort that makes a world of difference to a scared child.”
Despite what many of the gorgeous smiling pics of Tamsin suggest, having cancer is scary, it can hurt, and it takes an incredible physical and emotional toll on children and their families. “Wellington Children’s Hospital welcomed us with love and care and have made sure that Tamsin was cared for every step of this journey ever since. Through medication, tests, scans, theatre visits, and inpatient stays Tamsin’s team have reassured her, comforted her and supported her in a way that any parent could hope for when seeing their child go through this.”
Throughout treatment there were times when Tamsin was weak, sick, tired and scared; and other times when she was skipping around the room laughing, joking and playing games. Through the phases of her treatment Tamsin has spent many hours, days and nights within the walls of the hospital. “She has felt safe in Ward Two’s Oncology Unit where she spends a lot of time and knows which bed she likes best, she has found laughter and happiness from visits from Hospi, she has felt secure and safe during treatments through amazing teams of play specialists, social workers, and dietitians, and she has found comfort in seeing the smiling nurses and doctors that she has built trust and friendships with.”
“We are so extremely grateful to have the services and resources available there for us. We had always donated whenever we could, never knowing how much of a huge role the children’s hospital would play in our lives. We are so excited to see what the new hospital will be like, and have no doubt it will be amazing, Wellington Children’s Hospital and Ward Two’s Oncology Unit will always be our safe space.”
We were thrilled to celebrate with Tamsin and her family, at her bell ringing ceremony earlier this year, marking the end of her cancer treatment and long journey.
Kobe’s Story
Kobe is a super-sporty kiwi kid who enjoys nothing better than riding his bike, running and playing too many team sports to count one hand! Kobe had a dramatic start to life and is tackling huge challenges with courage, determination and the support of his wonderful family. Every year Kobe travels from their farm in Taranaki for a week of appointments and treatment at Wellington Regional Children’s Hospital.
“Hi, my name is Kobe, I’m 10 years old and I live in rural Taranaki on a farm with my Mum, Dad and little sister Emma. I arrived into my family’s world in a hurry at Wellington Hospital at 36 weeks. I was rushed straight to theatre when I was born where I had to have a tracheostomy put in to help me breathe. My Mum and Dad then found out three hours later that I had been born with Treacher Collins Syndrome. I spent the first 4 months of my little life in the Wellington Hospital NICU before I headed home to start my life journey with my family at home in Taranaki.
Treacher Collins Syndrome is a rare genetic syndrome that effects 1 in 50,000 babies born here in New Zealand. It caused my jaw and cheek bone area to be underdeveloped which has resulted in a lot of my craniofacial area to have not formed properly. Treacher Collins Syndrome has caused me to have hearing, breathing, and eating problems. I wear two BAHA one for either side of his head. A BAHA is a hearing aid that works through bone conduction; it picks up the vibration of sound and sends it to my cochlea to help me hear. These are fitted to a band which sits on my head. I can’t eat normally like other kids through my mouth, so I am fed through a gastrostomy that is a little tube into my tummy. Because my jaw is underdeveloped and parts did not form at all to keep my airway open, I can’t breathe normally so I have a tube in my neck called a tracheotomy to help me breathe.
In my 10 years of life I have had 10 big big surgeries at Wellington Hospital to help with my breathing, to support my face, and to help me to be fed and see better. I come back to Wellington for a week of appointments each year (My Warrant of Fitness). I go to theatre to have my airway checked by my amazing ENT surgeon Dr Katherine Bagley, have my teeth checked and any work done by the dentists in theatre. I catch up with my good friend Claire the ENT nurse, have a visit with my Speech Language Therapist Bryony Forde and have my yearly check up with the man who is responsible for all of the amazing craniofacial surgeries I have had done since I have been a baby – Mr Charles Davis. I am so lucky to have the most terrific team of people looking after me on my medical journey with the knowledge and skills to help me to live and develop in life.
I have had 19 anaesthetics, 17 visits to theatre and lots and lots of medical procedures done over the last 10 years. I don’t like going to hospital or going to theatre but I’m brave – I have my family with me, my fantastic friends I get to see when I’m here, and all the great people at Wellington Hospital who look after me when I’m in for simple procedures, day ward stays, ward stays, big operations from my doctors, anaesthetists, recovery room nurses, paediatricians, surgeons right down to the cool orderlies!
I am a sporty kid that loves to ride my mountain bike and BMX bike, to play cricket, tennis, golf, soccer, hockey, basketball and have fun with my friends and other kids – I’ve even done a Weetbix Tryathlon in New Plymouth last year where Para Olympian Rachel Maia handed out our medals.
I know I have many more challenges ahead in my future with having severe TCS and there will be more operations that will follow as I get older, but right now I am loving being a 10 year old on my adventure of life.”