Here’s The Scary Reality Behind Having A Child With A Terminal Disorder
At just six weeks old, doctors diagnosed Kayla Glaser with Cystic Fibrosis. A disorder her mom Kerry had never heard of before. “I remember asking the doctor if it was serious. The next thing I remember the hospital grief counsellor was in the room,” she says.
Kerry then made the mistake of googling the disease. “My entire world imploded that day. How does a mother come to terms with the fact that she will ultimately have to bury her own child one day and there’s absolutely nothing you can do about it?” she asks.
Cystic Fibrosis (CF), a progressive genetic and terminal disorder, causes a build-up of thick sticky mucous in the lungs and digestive system. This abnormal mucous causes severe problems with breathing and bacterial infection in the lungs, resulting in chronic coughing, wheezing, shortness of breath and inflammation. Over time, the build up of mucous causes permanent damage to the lungs and patients will need a lung transplant.
Kayla’s cystic fibrosis eventually took its toll on Kerry and her ex-husband. She developed severe postnatal depression and suffered two emotional breakdowns. “I saw a psychologist and a psychiatrist for a long time. I had to go on anti-depressants too,” she admits. Living in hospital and watching their newborn scream and suffer also placed strain on their marriage. “Kayla being diagnosed changed both of us. We went into survival mode I guess,” she says. “He became distant and I broke down.”
The constant visits to the hospital also lead to Kerry losing her job, placing even more financial strain on an already struggling family. “I literally lost everything. My home, my dogs, my marriage, my friends, my dignity,” explains Kerry. But with the help of her incredible parents, she finally managed to get back on her feet.
A fellow CF mom from America sent Kerry a book called “Who I Am”, which made explaining the disorder to Kayla easier. “Kayla and I read it every night. She loves the book. It’s a story about a day in the life of another CF girl,” explains Kerry.
Despite her illness, Kerry says Kayla always manages to smile. “She is an absolute trooper – she never complains about her treatments,” says Kerry. Kayla’s daily treatments include one hour of physiotherapy and wearing a vibrating jacket, 20- 30 pills and using a nebulizer for 45 minutes. This doubles or triples when Kayla is sick.
Kerry says they’ve almost lost Kayla on several occasions, but Kayla has thankfully always managed to pull through. She says one of the scariest moments was when Kayla developed pertussis (a whooping cough), before she had her vaccine. “No parent should have to watch their child almost pass away from a preventable disease,” says Kerry.
Another challenge Kerry faces is trying to give Kayla a ‘normal life’. “As a mom, all you want to do is protect your child. CF forces you to make some seriously difficult decisions.” One of these decisions was whether or not to send Kayla to school. “We know that she is going to pick up germs and end up in hospital – but we also can’t keep her at home in a bubble.”
But finding a school for Kayla turned out to be a daunting experience. One of the schools Kerry applied at rejected Kayla because the headmaster didn’t want to put other children at risk. Even though Kerry explained that CF is not a contagious disorder.
Their luck changed when Elkanah House contacted them. The headmaster and her team had done extensive research on CF and welcomed Kayla with open arms.
While the life expectancy for people with CF has vastly improved since the 1950s, the harsh reality remains that only 5% of people with CF are currently over 40. Orkambi, the medication that helps extend the lives of CF patients, currently costs R3million per year. An expense many patients can’t afford.
Kerry says that unless a cure is found Kayla will one day require a lung transplant. “So until a cure is found – our job is to keep her as healthy as possible to give her a real chance,” she says.