US operation ‘a matter of life and death’ for Joburg's baby Caylum

By Jana Smit
12 August 2016

He was born in January this year, but seven-month-old Caylum Willemse has only spent three weeks at home.

He was born in January this year, but seven-month-old Caylum Willemse has only spent three weeks at home.

The little boy, from Johannesburg, has an abnormal connection between the oesophagus and the windpipe, called a tracheo-oesophageal fistula.

He also suffers from esophageal atresia, a congenital condition in which the upper part of the oesophagus doesn’t connect with the lower oesophagus and stomach, and tracheobronchomalacia, a rare condition in which the windpipe’s cartilage is soft.

Caylum’s condition is life-threatening, but there is something that might change his fate -- a complicated operation by an American specialist.

PHOTO: Facebook PHOTO: Facebook

Specialist Dr Russell Jennings has done pioneering work on the ground-breaking procedure in Boston in the US.

Unfortunately for little Caylum, the operation can't be carried out in SA.

Tracheobronchomalacia was diagnosed shortly after the his birth on 12 January this year. This means he’s not a candidate for a tracheotomy, where doctors would make an incision in the windpipe help him breathe.

“If he has [a tracheotomy] he won’t be able to cry, speak or laugh," his mom Samantha. “I can’t do that to my child.”

The blue-eyed boy was operated on for the first time when he was only two days old. In an aortopexy, the aortic arch was attached to the sternum. This caused the tracheal cavity to be pulled open. This technique is used for the treatment of tracheomalacia.

Caylum with parents Samantha and Wayne, and his sister, Charlotte (9). PHOTO: Supplied Caylum with parents Samantha and Wayne, and his sister, Charlotte (9). PHOTO: Supplied

Caylum also stops breathing sometimes. In his short life this has happened more than 10 times. He has been in hospital since 20 March and in the intensive care unit since 9 May.

Samantha says Caylum was affected by two viruses two weeks ago. “He was so sick he had to be sedated.”

“Because he has tracheo-oesophagal fistula he’s susceptible to viruses. One virus that he became infected with caused swelling in the windpipe and he had difficulty breathing. Two weeks ago he stopped breathing.”

Samantha says he’s better now but viruses can be deadly.

The only treatment in South Africa is a technique whereby air is forced into his lungs by means of an air bag and device placed over his nose and mouth. “We tried it for half and hour but he fought so much that his count dropped. It was too much for him,” she says.

The Caylum Willemse Foundation, a non-profit organisation, has been established to raise money to send Caylum to Boston for his life-saving operation.

Adriaan Gerber, a representative of the organisation, says about $500 000 (about R6,8 million) is needed for the operation and expenses in America.

“Thousands of people are actively involved in spreading Caylum’s story. We’re busy night and day with our fund-raising efforts and are receiving hundreds of emails, Facebook messages, tweets and WhatsApp messages from people all over the country who want to help,” he says.

A fun run will be held in Johannesburg on Sunday 4 September, and another is being arranged by a volunteer in Paarl, in the Western Cape.

For more details go to The Caylum Willemse Foundation Facebook page.

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