Samuel Davy, aged five, has spent nearly a third of his life in hospital.
Not that this curly-haired infant with a mischievous sense of fun lets this interfere with his favourite interest - cars.
His hospital bed-table is littered with toy cars when the Herald visits. When we ask about his mum Shirley's car, Samuel nips up to the window, presses his face on the glass and points out "Rhonda the Honda" in the carpark below.
"Every doctor and nurse, he knows the models and colours of their cars and he has a great memory," says Mrs Davy. "He may not see them for six months and they walk in and he says, 'How's your blue Mazda', and he names them. All our cars have names."
Her son is among a small group of patients who, because of chronic conditions, get to call Starship children's hospital in Auckland their second home. He is also one of the thousands of patients Starship sees each year that the Herald's Help Our Kids campaign aims to help by raising $150,000 to help fund vital equipment for a new operating room at the hospital and the refurbishment of four existing operating rooms.
Samuel, of Burswood in southeast Auckland, had by earlier this month spent 587 days as a hospital inpatient, mainly at Starship and including three months in the neonatal intensive care unit of National Women's. His longest unbroken stint out of hospital has been three and a half months.
Shirley Davy says Samuel "never grumbles or moans about anything ... he has every reason to be moaning and he's just happy and content." Photo / Jason Oxenham
Samuel's urinary system and large intestines don't work properly, because of a genetic disorder. Photo / Jason Oxenham
Mrs Davy, the personal assistant of a primary school principal, and husband Francis, a World Vision manager - who also have two older children, Jasmine, 13, and Candace, 11 - take turns sleeping over with Samuel when he's in Starship.
"We call it tag parenting," Mrs Davy says.
She is speaking publicly to support the Starship fundraising campaign to upgrade and expand its operating theatres. The project hadn't been explained to her, but she had already appreciated the benefits of stage one - the pre-operative and waiting areas - completed in July.
"I used to hate going in there with a distressed child. There weren't any private spaces. The anaesthetist was trying to get you to sign about the risks and he [Samuel] is having a paddy. It's so much nicer now, it makes a really big difference; he's much calmer because there isn't this helter-skelter of kids."
Samuel's urinary system and large intestines don't work properly, because of a genetic disorder that must be inherited from both parents to become active. He is one of only two people in New Zealand with the condition, called MMIHS or megacystis microcolon intestinal hypoperistalsis syndrome.
It is extremely rare, 230 cases having been reported worldwide since it was first described in 1976, according to an Irish review last year. It is often fatal.
Samuel can't fully digest food so he doesn't eat or drink, apart from the odd small sip of water. Instead he is fed nutrients through a thin tube that goes into a vein via his chest and liquid formula through a tube into his small intestine below the stomach. Urine is removed via tubes that emerge on his belly and intestinal waste is collected in a bag from another opening that connects to the end of his small intestine. A sixth tube is to remove digestive fluids from his unused stomach, reducing nausea and vomiting.
Samuel loves cars. his mum, Shirley says: "Every doctor and nurse, he knows the models and colours of their cars and he has a great memory." Photo / Jason Oxenham
The Help our Kids campaign aims to raise funds to help upgrade the operating theatres suite at Starship. Photo / New Zealand Herald
Samuel is a frequent user of Starship's theatres. He has had 31 major operations involving his kidneys, bladder, intestines and heart. He has had a further six, less-complex procedures that were still under general anaesthetic. His first operation was when he was a day old and he had nine major surgeries in his first three weeks.
Samuel's parents were living in Laos for an aid charity project when he was conceived. A pregnancy scan at 20 weeks in Thailand indicated a kidney disorder - a different one from what he actually has - and they were told he wouldn't survive.
"We were strongly advised to terminate at 27 weeks," said Mrs Davy. "We said no we won't. We will take what God gives us and we are to be his parents, whether that's to be an hour or a day, our job was to protect and look after our child, so we told them we wouldn't consider that. The condition they based the need to terminate on, he doesn't have."
But he does have other renal/urinary problems and, on the day after Samuel was born, with his abdomen becoming seriously distended, his gastro-intestinal failure was detected in surgery. This collection of symptoms pointed to MMIHS and the Davys were left to comprehend "this whole different language" and the concept of tube-feeding and Samuel not eating or drinking.
" ... he was about two days old and we had planned his funeral, we had been trying to prepare his siblings ... "
Five years later, Mrs Davy marvels at her boy's energy and normality when not laid low.
"He's not a sick kid. He's the life of the party. When he's clothed and running around you wouldn't know anything's wrong. We try to normalise his life, so when he's well enough he's at kindergarten. We hope he will start school in February.
Samuel has spent 587 days as a hospital inpatient. His longest unbroken stint out of hospital has been three and a half months. Photo / Jason Oxenham
Shirley and her husband take turns sleeping over with Samuel when he's in Starship. "We call it tag parenting." Photo / Jason Oxenham
"What brings us in here [Starship] back to back is urinary tract infections, so I do bladder wash-outs and we try to do everything we can to keep the infections at bay."
She says it's unclear what the future holds for Samuel but it may include more surgery aimed at improving his urinary tract.
"They are hesitant because it's also a huge trauma to Sam and it may not work. If he's well and happy running around at kindy, if we could keep these infections at bay ... "
Paediatrician Dr Simon Chin says Samuel has made great progress.
"He is a very resilient child, and the family have been remarkable in their care of Sam with all the complexity of care, repeated hospitalisations, with a rare condition which is difficult to treat."
Most people with his condition remained to some extent dependent on intravenous nutrition.
"Some overseas patients who have had severe disease have had intestinal transplants. What is positive for Sam is that he is able to tolerate some formula feed into his gastro-jejunostomy tube, so he is not wholly dependent on intravenous nutrition."
Mrs Davy is amazed by her son's attitude to life.
"He never grumbles or moans about anything ... he has every reason to be moaning and he's just happy and content. People always think or say 'It's been horrific and awful and hellish', and it has been hard, but it has also been amazing.
"We've learnt a lot as a family. I would say we are really strong."
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HELP OUR KIDS: What we are raising funds for
- 26-inch screens in direct view of surgeon and others to see surgical site.
- 42-inch wall-mounted screens. For trainees and team to follow operations without having to peer over surgeon's shoulder.
- At present, screen mounted on surgical equipment stack trolley.
- Computer system to capture and view images.
- Surgical images from cameras in lighting sets sent to screens in the theatre.
- Images will eventually be able to be downloaded to patients' notes.
- Only limited ability to store images at present.
- X-ray/scan images can be displayed on surgeon's screen. At present only on wall screens.
- LED lighting sets
- Reduces surgeon fatigue
- Some sets have a camera
THE FIT-OUT AND WHAT IT COSTS
NEW OPERATING THEATRE
- 1 x large lighting set: $28,000
- 1 x small lighting set with camera: $33,500
- 2 x 26-inch screens: $13,600
- 1 x 42-inch screen: $3900
- 1 x core system: $36,000
OPERATING THEATRES 2, 3, 4
- 1 x small lighting set with camera and 1 large lighting set: $50,500 per OR
- 1 x 26-inch screen: $6800 per OR
- 1 x 42-inch screen: 3900 per OR
- 1 x core system: $36,000 per OR
OPERATING THEATRE 1 (minor-procedures room)
- 2 x lighting sets (no cameras): $38,250
- 1 x 26-inch screen: $6800
- 1 x 42-inch screen: $3900
- 1 x core system: $36,000
Source: Starship foundation