Just like every 18 year old South African boy, Matthew Legemaate has big dreams, he dreams of designing cars, being part of the Sharks Rugby support team and becoming an Olympic archer, but unlike your average 18 year old Matthew was born with Tetralogy of Fallots and Pulmonary Atresia, which is a congenital heart defect that resulted in him becoming blue after birth. He has been on permanent oxygen and has been waiting for a heart and bi-lateral transplant for almost four years. Matthew is one of the 4300 people in South Africa that are currently waiting for transplants, and a second chance at life.
After undergoing open heart surgery soon after birth, Matthew spent the first seven and a half weeks of his life in ICU before the doctors sent him home. This time was a struggle for the family. Janet, Matthew’s mother, and Brian, her husband had to watch their son in ICU being put on and off the ventilator for weeks until they were eventually able to take him home. He weighed a small 2.3kgs, was still on oxygen, had a feeding tube and was hooked up to a pulse oximeter that would eventually get him off oxygen. “I had spent the previous week being given instruction on how to care for him, what to look out for and when to get concerned. To say I was a nervous wreck those first couple of days is an understatement. But what an incredible joy to be able to hold Matthew at will and do the many things we’d dreamed of doing while waiting for him to join our family,” said Janet.
Janet and Brian, recall that they didn’t know the long journey that lay ahead of them. Matthews first year of life was challenging, not only because of his heart issues, but also because his immune system was weak and he seemed to catch whatever bug that was going around. When Matthew turned one he need surgery again, but little did the family know that this would only be the second of five open heart surgeries. On 1 March 1999, Matthew was booked for his second open heart surgery, “the doctors allowed us to take Matthew into the operating theatre and stay with him until he was asleep. I have always done this but I can distinctly remember that Matthew just ignored me and wanted absolutely nothing to do with me for the first couple of days after his operation. He was obviously not happy with me for leaving him in there. Although we can smile about this now, it was heart breaking to watch him try and process the whole situation,” recollected mom Janet.
Matthew turning five brought a lot of new changes for the family. The family relocated from Botswana to Pretoria, South Africa, which meant a new school, a new home and a new church for the family. The down side was that the pressure in Matthew’s arteries was increasing and the monocuspid valve had calcified. In August 2004, Matthew had his third open heart surgery. After numerous procedures and interventions that left both the family and Matthew distressed, on the first of March 2007, Matthew was back in surgery because he was effectively in heart failure as the pressure on his heart was so abnormal.
Today Matthew is 18 years old and is doing grade 11 at Hillcrest High School. “As I look at Matthew today I am in awe of how far he has come. Despite being not well his whole life, he has a zest for life very few of us have. I know he is permanently tired, often has severe chest pains and battles to breathe at times, battles to remember or learn as his body fights for the oxygen he gets but he still carries on. I also know that there are some people out there who are far worse off at this present time than Matthew, and that is why we are determined to raise awareness about organ donation. If Matthew’s journey can achieve this we intend to tell it,” said Janet. To learn more about Matthew’s journey or to join his #hero777 challenge, click here to visit his Facebook page.
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