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Meet the Cardiac Kids |
Tyson's Story
Written by his Mother
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Tyson is a spunky five year old boy who was born with several complex congenital heart defects. His most serious and complex defect is a heart anomaly called Tricuspid Atresia, which is when the heart develops without a tricuspid valve. As a result, the lower right chamber of his heart didn't develop properly so he also has what's called Hypoplastic Right Ventricle. It basically means he was born with half a heart and his heart is unable to properly oxygenate blood to the lungs and the rest of his body.
Tyson was not diagnosed in utero and was actually born in the comfort of our own home, with my husband and our two midwives in attendance. All of us were unaware of how sick our son's heart really was. We had no idea that our world was about to be turned upside down. The labour and delivery went very well; he passed his Apgar score with flying colours, but we found it weird that his body temperature was quite low. Once this resolved, Tyson developed more symptoms that were setting off red flags. He never woke up on his own to nurse, he developed jaundice, and he became quite lethargic. By day eight he was very lethargic and also breathing rapidly. |
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At eight days old, a trip to the local hospital's emergency room for some phototherapy to treat his jaundice resulted in a much lengthier hospital stay than we had anticipated. From there, Tyson was admitted to Toronto's Hospital for Sick Children, where it was discovered that Tyson was born with four severe CHDs as well as two holes in his heart. He was diagnosed with Hypoplastic Right Ventricle, Tricuspid Atresia, Transposed Great Arteries, Coarctation of Aorta, with a VSD and an ASD. We were told that Tyson would need to undergo a series of at least three open-heart surgeries in the next two to three years; the first one being scheduled in a matter of days. The goal of the surgeries was to re-plumb his heart, so that the under-developed right side of his heart would be completely by-passed, leaving the left side to do all of the work.
Tyson underwent his first open heart surgery at 13 days old, his second OHS at 5 months old, and his third OHS was just after his second birthday. Despite the doctors' best efforts to re-plumb his heart so it would pump more effectively, Tyson then developed a condition in his left lung called pulmonary vein stenosis. This is when the veins which carry oxygen-rich blood from the lungs back to the heart are too narrow and cause high venous pressures. During his third OHS called the ‘Fontan', surgeons also did a sutureless repair of his veins (also called a ‘Coles procedure') which didn't work as well as they'd hoped. The narrowing in his pulmonary veins is causing high venous pressures and the blood in Tyson's heart is shunting across his fenestration in the wrong direction. This increase in his venous pressures means that they cannot close his fenestration and Tyson will remain on coumadin for life. The surgical team has decided that there is nothing more that can be done surgically to repair the damage done by his veins, and if Tyson's veins continue to narrow and his heart function continues to deteriorate then he will be listed for heart & lung transplant. We don't know when this will happen (hopefully not for many years) but for now Tyson is stable and we continue to enjoy the life that is right before our eyes and try not to look too far ahead.
Tyson also has asthma which is usually under control with medications but because of his reactive airways, his colds/flus often turn into pneumonia. With oxygen saturations of 85-87 at best, his little body can't fight this kind of lung infection on its own so it almost always results in IV antibiotics, oxygen therapy and a hospital admission. The fall and spring months are especially hard on him. Every year we are trying new and different ways to keep him from being hospitalized, but his body just needs to grow so that he is strong enough to fight off infection without intervention.
Today Tyson is an energetic five year old who goes to school and participates in normal activities like swimming lessons and summer soccer. His body has limits because of his heart and lungs, but over time he is learning his limitations and he knows when he has to slow down.
Throughout the years of being a Heart Family, we have learned not to take one single day for granted, to enjoy every possible minute with Tyson that we can, and to appreciate every day as a blessing from God. Every morning we wake up and are thankful that God has given us another day with him; another opportunity for us to love him and care for him, and to see the laughter and joy that he brings to our lives. I cannot explain how or why Tyson was able to live undiagnosed for 10 days, since his CHDs are so severe that he could have died within hours of birth. But I do believe with all of my heart that it was only by the grace of God that he is here today, and I know that He has big plans for our little heart warrior.
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