Cape Town - His bright hazel eyes and naughty smile give away little sign of the battle Cole MacLeod continues to face, as the energetic boy – dubbed a “miracle child” by doctors – hurls pillows at his older brother and younger sister in a playful pillow fight at their Belhar home.
Cole, six, is a far cry from the pale, skeletal baby who fought for his life in hospital, and continues to beat the odds while living with cystic fibrosis.
Joleen and her husband Brent were excited when Joleen fell pregnant with Cole, and looked forward to adding to their family after having an older son, Conner, three years earlier.
At birth Cole was beautiful and chubby but a few weeks later, Joleen and Brent noticed he wasn’t picking up weight.
At six weeks old, they took him to a paediatrician who referred them to Red Cross Hospital, where Cole was admitted the same day.
The couple stayed in the short-stay ward for the next few days as doctors scrambled to figure out why Cole was losing weight.
He was transferred to Tygerberg Hospital where Joleen and Brent spent every night at his bedside for six weeks until a student doctor mentioned the possibility of Cole having cystic fibrosis (CF).
This is an incurable genetic disease that affects a number of organs, primarily the lungs and pancreas, clogging them with thick, sticky mucous.
Infections and blockages can result in irreversible lung damage and death, but as symptoms vary, it made the disease difficult to diagnose in Cole.
As CF causes an abnormal amount of salt to be lost in the form of sweat, a test was conducted and once this was sent back to Red Cross Hospital, Cole’s condition was confirmed.
“Brent started looking up the disease and it really scared us,” Joleen said, not least because they discovered that many people with CF died in their 20s or at a younger age from lung failure.
After being sent home with “bags of medication”, Cole was still unable to pick up weight, leaving him nearly skeletal.
They returned to Red Cross, where more tests were done and the family was hit with another bombshell.
Cole was suffering from a secondary condition resulting from CF. Mucus blocking the ducts of the pancreas, which supplies enzymes required for digestion, were preventing him from digesting food.
It was discovered that Cole had no villi, or stomach lining, preventing him from gaining nutrients as food left his body as quickly as it was ingested.
For the next seven months, Cole lay in hospital on Total Parenteral Nutrition (TPN), administered through a needle or catheter, bypassing the usual process of eating and digestion.
Month after month, tests showed no growth.
Eventually, doctors stopped the TPN and told Brent and Joleen to take Cole home, make him comfortable and spend as much time as they could with him, as there was nothing more they could do.
“I felt like I lost a piece of my soul… and we didn’t deal well. You’d go to bed every night and realise you may wake up the next morning and he would be gone,” Joleen said.
“I kept thinking, ‘How do we explain to our parents that our son is dying?’ You even find yourself thinking about funeral arrangements, how we didn’t want flowers, we wanted donations for a CF fund… but we continued to pray,” Brent added.
Miraculously, Cole started picking up weight in a development that stunned doctors, who had no idea where the stomach lining came from.
“Doctors called him a miracle baby… even when we go to hospital for check-ups today, they’re still amazed,” said Joleen.
And after spending almost two years in and out of hospital, Cole began growing.
After he turned one, his younger sister, Jemma-Blythe, was born and the two began growing together, learning to crawl, eat and play.
Cole, now in Grade 1, is a budding sportsman who plays rugby and hockey. Described by his mom as fearless, he soaks up knowledge and excels at school while his protective older brother, Conner, now nine, checks on him every recess.
Cole has to take at least five kinds of oral antibiotics before every meal, something Jemma, now five, makes sure he does.
But for the rest of his life, he will be susceptible to infections which may become life threatening.
As the disease progresses, lung infections may lead to breathing problems, frequent sinus infections, diabetes mellitus, difficulty with digestion and even infertility, while the family will continue to battle with hospital bills already totalling almost R1 million and the constant replenishing of medications.
However, with new treatments, CF sufferers now have a life expectancy of as high as 40 to 50.
Cole continues to spend about two weeks a year in hospital – what the family terms his “holiday home” – with nurses who have taken to the bubbly boy.
“We’ve made peace with his condition and we’ve left it in the Lord’s hands. Cole knows he’s sick and we deal with it together.
“I just want him to live a normal life and not feel sick or afraid, like he has to stay away from other people. We want him to enjoy his life,” Joleen said. - Weekend Argus