WATCH: Caylum fights courageous battle

Springs-born Caylum Willemse suffers from a rare birth defect called tracheo-oesophageal fistula (TOF) and oesophageal atresia (OA).

TOF is an abnormal connection between the oesophagus and the trachea and OA is when the oesophagus develops in two parts, meaning food cannot reach the stomach.

He was born on January 12, weighing a mere 1.87kg, and has been in and out of the Netcare Clinton Hospital in Alberton since then.

Samantha Willemse (29), his mother, says he had to undergo life-saving surgery when he was only two days old.

She and her husband Wayne Willemse (25) attended an infant cardiopulmonary resuscitation (CPR) course to prepare them for emergency situations before Caylum was discharged.

Little did they know how soon they would have to apply this treatment.

“Caylum started having choking or blue spells, meaning that for short periods a reduced amount of blood flows into the lungs, when less oxygen is delivered to the body,” says Samantha.

The infant was back in hospital where a barium X-ray, a gastrointestinal examination used to diagnose abnormalities, was done on him.

“Watching the nurses trying to save our baby is not easy and every time this happens, we pray that he will make it,” she says.

He went for a bronchoscope on February 11 after which he was diagnosed with severe tracheomalacia and was scheduled for theatre again on February 19.

Samantha says this operation, where doctors fastened the aorta to the breastbone to make space for the trachea, was vital.

His parents say he didn’t lose any weight after surgery and is a happy child despite his circumstances.

Three weeks after Caylum was discharged Samantha noticed her son was suffering another blue spell.

Visiting family at the time, they rushed him to the nearest hospital in Emalahleni (Witbank).

Wayne had to apply CPR on their way to hospital and Samantha remembers hearing Wayne screaming “My baby is dead!”.

“The doctors worked on the infant for almost an hour and managed to revive him,” says Samantha.

During this time Caylum was diagnosed with tracheomalacia again, but this time the trachea had collapsed from the back.

“We are forever grateful to Dr Charles Carapinha from the Netcare Clinton Hospital and the nursing staff who have done everything in their power to save our child and to make him as comfortable as possible,” says Samantha.

She claims Carapinha informed them he has never experienced this in his career as a specialised paediatric surgeon and had to talk to a Dr Russell Jennings from the Boston Children’s Hospital, in the United States of America, for advice.

Although Caylum was discharged after the diagnosis, he returned to hospital one day later after another blue spell.

A computerised tomography (CT) scan was done and doctors discovered he has posterior tracheomalacia and bronchiamalacia.

Since then he has been in hospital and is currently awaiting a posterior tracheopexy operation that can only be done by Jennings.

While they are hoping the operation will be done here, due to the severity of his condition he may need to travel, with his parents, to the States for his operation.

“If it is done here, this will be the first time this procedure will be done in South Africa,” says Samantha, who adds that they are worried about funds should they need to take their little boy to America to save his life.

In the meantime Caylum has picked up an unknown virus in hospital and has since experienced more problems with the trachea.

The family have no option but to temporarily move closer to the hospital and will remain there indefinitely until the date of the operation has been established.

Samantha can be contacted on 082 568 4712 and Wayne on 072 496 7921.

Caylum’s daily progress is posted on https://www.facebook.com/caylumwillemse/.