|| Meet the Cardiac Kids
Written by his Mother
Tyson was born with severe, complex congenital heart defects (CHD). His most serious and complex defect is a heart anomaly called Tricuspid Atresia, which is when the heart develops without a tricuspid valve and the lower right chamber of the heart is too small to pump blood effectively. Thus the heart is unable to properly oxygenate the blood to the rest of the body.
Tyson was born in the comfort of our own home, with my husband and our two midwives in attendance; all of us unaware of how sick our son's heart really was. We had no idea that our world was about to be turned upside down. For the first few hours, he was pale in colour and had a hard time maintaining a normal body temperature. After the first day, his temperature stabilized but over the next few days other problems started. He wasn't feeding well and was very lethargic; then he developed jaundice and also starting breathing rapidly.
At eight days old, a trip to the local emergency room for some phototherapy to treat his jaundice resulted in a much lengthier hospital stay than we had anticipated. IVs were placed in his head because his arms were too tiny to find a vein, a spinal tap was done, and various tests were run. The conclusion was that Tyson was in heart failure and his other organs were beginning to shut down. His CHD still undiagnosed, an echocardiogram at our local hospital revealed that he had “a rather large hole in his heart.”
From there, Tyson was admitted to Toronto's Hospital for Sick Children, where it was discovered that Tyson was born with 4 severe CHD 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.
In short, the right side of his heart is completely underdeveloped (basically, he has half of a heart), his main arteries are mixed up, his aorta is narrow, and he has two holes as well. 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, spent three weeks recovering at Sick Kids, and made it home just in time to spend Christmas with his mom and dad, two older brothers, and older sister. The winter months at home were extremely busy; Ng tube feeds, low-fat portagen formula every 2 1/2 hours round the clock, pumping breast milk, cleaning up the aftermath of reflux problems, and administering the seven different medications that Tyson had to take. The medications were to strengthen his heart, prevent fluid retention, help with reflux, and prevent blood clots since he now had a Gortex shunt placed in his heart. The anti-coagulant used to prevent clotting was an Enoxaparin needle which we had to inject into his legs twice a day, morning and night.
If that wasn't enough to keep us hopping, we also went for weekly, bi-weekly, and then monthly check-ups at Sick Kids; as well as regular appointments to the pediatrician, regular appointments to his family doctor for his immunizations, and monthly Synagis injections to prevent RSV (a virus that causes very serious respiratory tract infections.)
Despite our attempts to keep him in a bubble, Tyson struggled with his health through much of his first winter because of his compromised immune system. His life was spared again when he was four months old and had to be hospitalized because of a serious pneumonia infection, causing him to be intubated (on a ventilator) and in Cardiac Critical Care at Sick Kids for almost two weeks. In May 2009 when he was five months old, Tyson had his second open-heart surgery. Again he was hospitalized longer than we anticipated because he had developed another pneumonia infection. Once we got home from his second surgery, his health was much better; he still seemed to catch quite a few colds but managed to avoid any hospital stays until March 2010. His third open-heart surgery was just this past December 2010. This time he stayed ten days at Sick Kids; only one day in Critical Care and the rest of the time he recuperated in his own room on the cardiac ward.
Today, Tyson is an energetic two-year-old who is developing normally, talking more and more every day, and loving all the things that typical two year old-boys love: hockey, trucks, balls, books, and music. It is such a blessing to have him in our lives! Through this experience, we have learned not to take one single day for granted, to enjoy every possible minute with him 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 Tyson another day with us; another opportunity for us to love him and care for him, and to see the laughter and joy that he brings to our lives.
We are often reminded that if Tyson was born in 1978 instead of 2008, there would have been nothing that they could have done for him. But since then, there have been so many advancements in medicine and technology, that doctors have been able to come up with ways to prolong the lives of children with severe congenital heart defects.
Even in the early 1980's when these surgeries were first being performed, survival rates were low and many babies did not make it. Now however, more and more babies are surviving the first and most risky surgery called the “Norwood”, usually performed within days after birth. Then they are able to move on to the “Glenn”, typically performed between 4-6 months of age, and the “Fontan” performed between 18 months – three years of age. Even still, Hypoplastic Right or Left Heart Syndrome is responsible for 25 per cent of all cardiac deaths under one year of age. With those kinds of odds, we spent hours in prayer, begging God that Tyson could beat those odds, and asking Him to spare his life.
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.