It is now July in 2017, and Matthew is 19 years old. If you were to ask me how we got here, I would have to say with many, many tears, much stress, lots of research and faith not only in God, but in the incredible doctors who have helped us along the way and some more tears.
Matthew was born in January of 1998 after a difficult pregnancy, but with no indication that there was an issue with him. He spent the first 24 hours of life in the neonatal ICU before being airlifted to a hospital in Johannesburg from Witbank. The doctors had not expected him to make the night, as he was critically ill.
Unknown to the doctors at the time, Matthew had been born with Tetralogy of Fallots and severe pulmonary atresia. In his case he basically had a three (instead of the normal four) chambered heart and his pulmonary trunk, the artery taking the deoxygenated blood from the heart to the lungs, had a piece missing included the pulmonary valve and ended in a blind nipple. This missing piece meant that the heart and lungs were not connected so Matthew should have died at birth.
However, because nature puts in a small bypass line, a ductus arteriosus, a small trickle of blood through it to the lungs enabled the doctors to keep him alive until the cardiologists and surgeons in Johannesburg could work their miracle. This small bypass line is called the patent ductus arteriosus.(PDA) and it normally closes naturally within 36 hours of birth.
That first week of Matthew’s life was certainly a roller coaster for him and his parents. He was in and out of theatre, first to do open heart surgery where they only linked the heart and lungs. He was critical for days and went back to surgery a number of times that week as the doctors tried to close his chest. He had retained an incredible amount of fluid so every time they tried to close his chest his heart stopped.
The ICU experience is never pleasant but as first time parents with a critically ill child we couldn’t fault his care or the staff involved. It was only 7 weeks later that Matthew finally came home on oxygen 24/7. As the months went by and we made often bi-weekly visits to the pathologists for Matthew’s blood work to be done, I can remember him starting to cry as soon as we turned into the road where the pathologists were.
We had already been told that Matthew would need further surgery but at this point never expected he would eventually need a heart and bi-lateral lung transplant. We made the decision early on that Matthew must live as normal a life as possible and experience as much as he could of what life had to offer him.
His second surgery was at 15 months of age and this fighter was up and on the go within days. Over the years we’ve seen more ICU’s than we care to think about. Matthew has had numerous cardio catheterisations, CT scans and open heart surgeries. He has confounded the doctors, survived against amazing odds when things have not gone as expected, and through it all remained a fighter and positive individual.
After one of Matthew’s subsequent operations, his doctor recommended that Matthew be given his dream by The Reach for a Dream Foundation. This organisation gives dreams to terminally ill patients so, without saying so, this told us what the doctor thought. Matthew chose to go to Disney World in Florida USA. We had to raise the money for the tickets for our family of 4 but were given a week at Give Kids the World Village which included everything we would need and 4 day tickets to Disney World and Universal Studios. It was a dream come true, for Matthew.
At 13 years of age, Matthew was on permanent oxygen and also on the transplant waiting list for a heart and bi-lateral lung transplant and has remained like this since then. At the time his size was a large issue for transplant but over time he has grown and the possibility of ever finding a donor increased ever so slightly.
When Matthew was put on the transplant list we didn’t initial think it was a big deal BUT then we started to do research and our world fell apart. We found that the number of people who the opportunity to have a transplant is a very small percentage. Most don’t get this second chance so we decided as a family to try make a difference for ALL people waiting for an organ or tissue transplant. We wanted to try and help as many people as possible to get their second chance at life.
And so our journey of creating awareness began – we told everyone about organ donation and helped with awareness stands. However, it was only in 2015 after discussing the dreadful statistics of donor referrals and transplants in South Africa, that we started our first Facebook page to raise awareness:- “Matthews-Journey come along for the drive”.
By now Matthew was starting to battle more, schooling became more difficult and we noticed him have bursts of energy and then crashing exhausted; all whilst still on oxygen 24/7. The doctors had also told us that there was no way (including the second opinion from a specialist in Cape Town that Matthew’s Cardiologist sent us to) that they would be doing any further interventions to try and alleviate Matthew’s symptoms – quite simply, the likelihood of his survival would be so small that it didn’t justify the potential benefit.
In terms of a transplant, Matthew has a semi- unique situation for the doctors to contend with. Matthews’s previous open heart surgeries have caused his heart and lungs to become attached to the back of his sternum and to the wall of his chest cavity. This is going to make preparation for transplantation more difficult.
We are all amazed at Matthew, because despite his incredibly high Pulmonary pressure (significantly above normal because of calcification of his pulmonary valve and artery), his very enlarged right ventricle, the number of different lung conditions he has, his continuously aching body, the fluid retention, and the tiredness caused by lack of oxygen even whilst on it, he remains a positive and fun loving young man.
Do we harp on the hard stuff, of which there is a lot? No we don’t. We look to the future with trepidation, expectation and obviously concern. Do we get stressed when Matthew goes into heart failure or gets ill? Yes, we most certainly do! Do we worry? Of course we do, he is our beloved son, but we also know that he has made the very best of a very difficult situation, and despite not being well his whole life, he has the ability to impact others positively. We are incredibly proud of Matthew’s character and attitude to life.
Please help us raise the awareness needed to increase the odds of each and every person on the transplant waiting list by Talking about organ donation, registering as an organ donor and sharing what you have done to create more awareness.
