Johannesburg - Many a night the Willemse family thought their baby son Caylum would not make it through, but his incredible “fighting spirit” and smiling disposition show that “the world still needs” their seven-month-old.
He had his first major surgery when he was two days old, stopped breathing 15 times and has gone into cardiac arrest. “But God has protected him and brought him back,” says Samantha Willemse, his 29-year-old mother from Springs, east of Joburg.
Doctors have diagnosed Caylum with tracheo-oesophageal fistula and oesophaegeal atresia - the oesophagus develops in two parts and food cannot reach the stomach - as well as tracheobronchomalacia, a rare condition where the windpipe cartilage is soft.
These conditions mean that fluid can leak into his lungs, causing pneumonia.
After his first surgery, he started to have “blue spells”, where he struggled to breathe. Caylum was rushed to hospital, without a heartbeat. “We had to learn CPR before we took him home,” says Willemse.
“The doctors can’t explain why he doesn’t have brain damage because we’ve brought him back - he went 45 minutes without a heartbeat.”
His condition is rare - his trachea has collapsed from the back. But there are no doctors in South Africa who can perform the complex, life-saving operation he needs.
After months of searching, Caylum’s parents tracked down US surgeon, Russell Jennings, from the Boston Children’s Hospital, who has completed a posterior tracheopexy with success. “We’ve tried to get him here to do the operation on Caylum and to teach local doctors the procedure, but red tape is stopping him from coming here.”
Now his parents are attempting to raise the $500 000 (R6.9m) it will cost to fly him to the US for the procedure.
Their #getcaylumtoboston campaign has spread like wildfire. The couple had raised R15 000 a week and a half ago, but through their Facebook community campaigns, donations have surpassed $100 000, or R1.3 million.
This includes a staggering R1 million donation from an anonymous source.
To get to the US, Caylum will need to be transported in an “air ambulance”, says Willemse. “It’s a jet that is made into an ICU with the patient, ourselves and a doctor team.
“They will fly to Germany and then straight to Boston.”
She has faith the operation will be done. “On Monday we went to apply for a passport for Caylum. I just believe God is opening doors to get him the operation he needs. So many people are touched by him and by his story.”
Willemse has given up her job to be with her son, and she and her husband, Wayne, who works at a factory in Delmas, have moved to Meyerton to be closer to Netcare’s Clinton Hospital in Alberton, where their baby is in ICU. Their daughter, Charlotte, 9, is staying with grandparents.
“We had to move closer to the hospital so that if Caylum stops breathing and they resuscitate him, we can be there quickly. Our parents are giving her all the love and she is undergoing trauma counselling.
“It’s been difficult, a massive nightmare. But we know things will be okay.”
* Visit www.caylum.org.za for more details.
Saturday Star