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May 20, 2018 Latest post:
Jul 14, 2018
Daniel was born just after Christmas on December 28, 2012. Unknown to us at the time, CHD would change our world forever.
Daniel was transferred to the NICU in Crouse and it was explained to us that Daniel had a Congenital Heart Defect (CHD) or rather a few of them. The pediatric cardiologist explained that CHDs are the most common birth defect and that they affect 1 in every 100 births, but vary in severity/complexity. The heart is one of the earliest organs to develop in utero at around 3 weeks. A baby's heart beat can be detected as early as about 8 weeks on a sonogram. Most CHDs have unknown causes although it can sometimes be linked to heredity.
Daniel's specific diagnosis is known as Tricuspid Valve Atresia with Transposition of the Greater Arteries and an Interrupted Aortic Arch. A typical heart has four chambers. Daniel's right ventricle didn't fully develop and there was a hole in the wall between his atrium. Additionally, his aorta and pulmonary arteries were flip-flopped coming off the wrong sides of the heart and in fact the aortic arch itself was interrupted and didn't fully connect. The aorta is vital to pumping oxygenated blood out to the body. Because Daniel’s aorta was coming of the tiny side of the heart it did not get much blood flow as it developed causing it to be underdeveloped. He also had another defect that worked to his advantage. An extra vein, called the patent ductus, that everyone has in utero, which usually closes either just before or after birth, was still open in him. This pathway was the only thing allowing his oxygenated and deoxygenated blood to mix. One of the medicines the doctor had started in his IV was one to make sure that this vein wouldn't close until he could have surgery to begin treatment on his heart. This medicine was not even available until 1986. The practice of heart surgeries is still in its infancy. Only a generation ago, Daniel's chance of survival would have greatly diminished. People with similar defects are only now just living into their adult years and doctors are learning as they go. It was explained to us though that he does not have a heart of an 88 year old; meaning you cannot ask a 2 chamber heart to do what God intended 4 chambers to do. It will just wear out earlier. Daniel truly fooled us all, as he should have been a blue baby. The doctors were even surprised at the severity of his condition because he looked perfectly healthy, but should have appeared otherwise.
The treatment available for Daniel's heart defects is trio of 3 surgeries. By no means does this "fix" or "repair" his heart to be a 4 chamber heart again. No. It is instead a way to take some work off his 2 chamber heart and reroute blood flow so that it does not over work his heart and wear it out even earlier. All of Daniel’s heart surgeries have been done at Strong Memorial Hospital in Rochester.
The first surgery he had at 7-days old was called the Norwood Procedure. This was an open-heart procedure where they rebuilt his aortic arch with cadaver tissue, fused the aorta and pulmonary artery on the inside of the heart to become a new aorta. They detached the pulmonary artery, which brings blood back to the lungs, off the heart entirely, took out the patent ductus and added a BT shunt to bring deoxygenated blood back to the pulmonary artery. Keep in mind, the surgeon is working on a newborn heart which is about the size of a walnut with veins of angel hair pasta. He had a delayed sternal closure, meaning his chest incision remained open with a sterile dressing covering it until his swelling had subsided and the chest could be safety closed about 3 days later.
At 7 months, he was ready for is 2nd open-heart surgery. This one was called the Glenn. During this procedure, the surgeon removed the superior vena cava from the heart and rerouted it directly to the pulmonary artery to replace the temporary shunt that had been implanted in the 1st surgery. The whole first day, Daniel was completely inconsolable. As the pressures were changed in his body, a lot of blood flow was backed up in his head and it caused him to have probably the worst migraine of all time.
We are now preparing for his upcoming 3rd open-heart surgery on June 21, 2018. Daniel is now 5 and 1/2 years old. He has grown a lot since his last surgery and now needs the final phase. You can hear how he puffs out after ascending a flight of stairs or after a short time of any type of physical exertion. He gets winded even walking up our driveway from the school bus. This third surgery will reroute the inferior vena cava. It will be detached from the base of the heart and rerouted via a synthetic tube on the outside of the heart to the pulmonary artery. The tube reminds me of a bendy straw as it will flex and grow with him. A hole will be poked between the tube and the heart to equalize pressures. This can one day be plugged during a cauterization procedure when pressures have stabilized.
Between his 1st and 2nd surgery, when he was about 18months, he also had a surgery on his eyes to try to help straighten them.
Will this be the end of his surgeries? Only time will tell. In the meantime, we have a positive attitude and are trusting in God. We are living our lives, caring, sharing, laughing, crying, eating, sleeping (some of us more than others-lol). We wanted to set up this site to keep loved ones updated during this next procedure.