Nelson Mail Feature

Courageous Cody and the pain of life
By TOM HUNT - Nelson Saturday, 08 March 2008
FACING DOWN DEATH: Cody Walsh has survived seemingly insurmountable odds.
Irony doesn't come much crueller - a young Nelson man aspires to become a chef, only to have roughly 90 percent of his lower and upper intestines removed.
The chances of 16-year-old Cody Walsh eating normally again are slim.
His chances of becoming a chef are less, and the chances of reaching his 21st birthday aren't that much better.
Cody and his family have pinned their hopes on a dangerous bowel and liver transplant, after which he has a greater than 50 percent chance of surviving fewer than five years.
It is also an expensive operation that would require Cody and his mother to spend up to a year in Toronto, Canada, at a cost close to $1 million.
It is money they don't have.
In the meantime, he relies for most of his sustenance on a feeding system known as TPN, or total parenteral nutrition, where a glucose solution is fed directly into a major artery, bypassing the need for the lower and upper intestine. If it doesn't sound like much of a life, it looks even worse when the risks it carries are considered.
Sitting in his family's small house near the Centre of New Zealand, Cody is pragmatic, almost buoyant, about the situation he has found himself in. He is an affable young man who enjoys playing guitar and computer games and regularly gets up to eight friends visiting at home each day.
He says he goes through "ups and downs" in itself a euphemism from a teenager who has faced death numerous times in the past six months.
"There's no point moaning about it, you know. That isn't going to help."
A lifetime of agonising, recurring stomach pains led to the day in September last year when Cody was rushed into an emergency operation after suffering what is known as mid-gut strangulation.
The complications came from a birth abnormality called malrotation volvulus, where the bowel sits incorrectly in the body. In September, the two parts of the bowel started twisting around each other, causing the perilous "strangulation".
This pain was far worse than any he had felt before, prompting him to describe it shortly afterwards as "like a thousand knife stabs".
The frightening fact is that if he had not had the operation to remove most of both intestines, he would have died within the hour.
Multiple operations and complications since have seen him spend at least 1400 hours, or the equivalent of two solid months, in hospitals since then.
One of those stints involved an operation that was very new with uncertain success rates, where the tiny remaining parts of his upper and lower intestines were joined.
It meant the upper intestine had to teach itself to work with the lower intestine and absorb food.
So far, it appears to be working to an extent.
Since January, Cody has been able to eat a handful of food each day, as well as drink small amounts of liquids.
Admittedly, most of it is later vomited up. Even so, just being able to eat after four months of being fed only by tube is a big step forward especially given that the glucose solution puts additional stress on his liver.
The first solid food after all those months was toast.
"It was good," says Cody, who now eats a wide variety, steering away from chocolate and high-fat foods which can put further stress on the liver.
But in many ways, he is faced with a lose-lose situation.
Cody still has to get the lion's share of his nutrients directly from the glucose solution, which means being stuck at home and plugged into a machine, while his liver suffers damage.
The transplant would seem like the logical solution but it is not clear-cut, either.
The huge cost is one thing, but then there is the greater than 50 percent chance that the operation will lead to his death within five years.
The only option is to remain on the glucose solution until bowel transplant survival rates increase.
This involves a steadily rising risk of liver failure, blood clots and metabolic problems, not to mention potentially deadly line infections caused by the glucose feeding system. Cody has already had three line infections.
At one point in January, an infection pushed his temperature so high that brain damage was a threat.
Cody points out he is down to the last three of five usable major arteries for the TPN treatment, after line infections took out the viability of two.
He needs two of those in use for when he has the operation, meaning one more line infection that takes out an artery could bring the need for the transplant drastically forward.
His surgeon at Nelson Hospital, Alf Deacon, who diagnosed his condition and has been in charge of Cody's case, is the first to admit that he is treading new ground with this case - the first malrotation volvulus case he has seen in a fully grown person.
"Cody's condition has been a steep learning curve for myself, the dietitian, the nurses, emergency department staff and the social worker involved in his care.
"It is an absolute team effort to keep him alive and well," Deacon says.
The condition is more common in babies and, at that stage, also relatively easily fixed.
But in adults, which for most medical reasons Cody is considered, the case is rare.
Current statistics for the liver and small bowel transplant show that, if Cody raised the money and got the Toronto operation now, there would be a 70 percent chance of him surviving two years, and a 40 percent chance of surviving five.
It is still a new operation, full of difficulties, and for a doctor looking at the numbers, keeping Cody on his present treatment is far preferable - even if the quality of life is far less than a 16-year-old should have to endure. Deacon says that is the pay-off Cody has to make for simply going on living.
In contrast, the chances of him surviving on the TPN regime are significantly better within two years, there is a 90 percent chance he will be alive, in five years 75 percent.
But there will still likely to be a day when Cody will have to sit down with doctors and decide whether the risks of complications with TPN outweigh the risks of transplantation.
Deacon, and Cody, hope that day comes later rather than sooner.
In the meantime, Deacon is in regular contact with the Toronto transplant team, giving them regular updates on Cody's progress and liver function.
"According to their transplant surgeon, we have done everything right so far."
Because no one in New Zealand is a specialist on the condition, a major source of information for doctors and Cody's family comes from a website dedicated to bowel transplantation.
It is here the frightening facts are lined up.
The operation was first tried in the 1960s, but all who had it died until the first successful procedures in the mid-1980s.
In the more than 20 years since the first successful bowel transplants, only about 100 patients have been able to fully stop TPN feeding, resume a normal diet and enjoy a healthy lifestyle.
Almost from day one, Cody and his family have had a staunch advocate in family friend Nyle Sunderland.
It was Sunderland who, while Cody was recovering from the initial operation in Christchurch Hospital, kicked the fundraising drive into action, contacting media outlets about Cody's dilemma.
At the time, it was thought that money, not danger, was the only thing that was standing in the way of the operation and following articles in the Nelson Mail, New Idea and a blog about the cause, donations flowed in.
They also flowed back out, as donation tins for the transplant were stolen from cafes at bars around Nelson. The culprit, Jason Peter Rochford, 22, was later caught, sentenced to nine months in jail and labelled as "pond scum" by the sentencing judge. He was also ordered to pay $650 reparation to the Cody Walsh Treatment Fund, but Sunderland says she has not seen a cent of the money and doubts it will ever arrive.
So far, about $11,000 has been raised and Sunderland says that recently hearing that the transplant will be delayed by years has been a good thing.
It, of course, gives them more time to raise funds, but also means that finances are not standing in the way of an immediate cure.
But like Cody, his family and doctors, Sunderland is realistic about the situation and the many perils line infections, liver failure, a dwindling number of viable arteries, as well as the eventual risk of a transplant. As she puts it, Cody Walsh and his many supporters are effectively "playing Russian roulette with everything".