Most parents know the feeling of worry deep down in the pit of your stomach when your child is sick. A temperature on my babies would send me into a flurry and a cough would keep me up during the night praying it wouldn’t turn into a chest infection.
For parents Deon and Katrina, a temperature or a cough on their little boy, Samson, means a whole lot more.
Deon and Katrina have four children. When their second child was born, there was nothing to indicate anything was wrong with him. He was a beautiful, healthy looking 2.9kg baby boy.
Deon and Katrina were ecstatic. They named him Samson which has the biblical meaning “of the sun” or “of exceptional strength”. Little did they know how much strength they were going to need in the days to come.
When the results of the neonatal heel prick came back three weeks later, their whole world was turned upside down.
Samson was born with Cystic Fibrosis (CF). It is a hereditary condition which requires a CF gene from both parents for a child to inherit it. Neither Katrina nor Deon knew they carried this gene and were completely shocked to receive these results.
To look at Samson you wouldn’t know there was anything wrong. His smile beams from his little ‘sunshine’ face. But while the outside looks fine, Samson is battling the fight of his life on the inside.
Cystic Fibrosis is a life sentence, you cannot ‘get-over’ it. In Samson’s case, there is not enough saline in his cells to lubricate the mucus from his lungs. Therefore over time, the mucus builds up; restricting the volume of air that Samson can take in and making his lungs prone to infection.
“It’s like trying to breathe through a straw that’s half closed,” says Deon, “It’s hard!”
It is a daily fight for survival. Every day, Samson has to take up to 40 enzymes to assist his body in absorbing the fat in his food. Samson needs three times the calories of a normal seven year old boy. Therefore, Samson’s lunch box is filled with what others may say is too much junk food but for Samson, it is vital for his wellbeing.
To help keep the mucus on his lungs lubricated, Samson has to have nebulised saline morning and evening, as well as physiotherapy and physical exercise.
Ever since Samson was born he has had to have lung function tests every two months to detect any deterioration in his lungs. The results take a week to return and are usually good, but sometimes the news is devastating.
On the 13th January, 2014, Katrina received a phone call from Samson’s Paediatrician. His tests had come back positive for a chest infection. For a CF sufferer, this is serious. It means hospitalisation for weeks, sometimes months until the antibiotics are able to get rid of the infection. This meant a huge upheaval for the family.
Samson was rushed to hospital within the hour. He was administered a drip which had to be re-administered every three to five days as the antibiotics are so strong that the vein eventually collapses. This is particularly difficult for Samson who hates needles.
Samson understands that Cystic Fibrosis is a bad disease that affects the lungs but he doesn’t understand why he has to have it. When asked what he doesn’t like about it, Samson replied, “I hate the needles, going to hospital, having hard tablets, and going to clinic.”
He doesn’t like being different to other children and getting bad bugs on his lungs. He doesn’t like not being able to play with children who have a cold, and having to spend an hour every morning and night doing physio is “wasting my playtime”. Cystic Fibrosis is certainly not fun.
He especially misses his family when he is in hospital. When the Occupational Therapist used a doll to help Samson explain his feelings, Samson said, “scared, sad, pain, wants it to stop, just wants to go home.”
“It’s hard as a parent to see your child suffer,” says Katrina, “and there’s nothing you can do but hold his hand and tell him that everything’s going to be ok.”
As it stands today, the life expectancy for sufferers of Cystic Fibrosis is 38years. Many sufferers still die young including children, depending on the severity of the disease in the patient.
It is possible for patients to have a double lung transplant in extreme cases but this does not eliminate Cystic Fibrosis from the body, it begins again so long as the lungs are compatible.
Deon and Katrina know that the worst is yet to come for Samson. As I am writing this, Samson has been urgently admitted to hospital again.
“That really is the worst part of it,” says Deon, “knowing what is yet to come. We love our boy and would do anything for him. I would gleefully give my life before his. But we just do whatever we can to give him longevity and quality of life.”
With ongoing research, there is hope for new developments in medication that are effective in minimising the symptoms which may hopefully increase life expectancy. There are over a thousand deviations of the gene that causes this problem but only limited drugs are being developed.
“Where we sit today is a thousand times better treatment-wise than it was ten years ago,” says Deon.
“We have that glimmer of hope,” says Katrina, “but we don’t rely on it. We have learned to live for today. We don’t sweat the small stuff, we try to enjoy the moment.”
Samson is grateful to have a Mum who is a PE teacher and a Dad who is a pharmacist, two things Samson needs on a daily basis and who better to give it to him than his own parents.
Deon and Katrina are particularly thankful to the supportive staff at the Royal Brisbane Hospital which include Physiotherapists, Paediatricians, Dieticians, Nurses and Occupational Therapists.
Originally published in the Goodlife Magazine Spring 2014
(c)Rebecca Moore 2014