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Jacob Hayes Shaw
Feb 15, 2018
Little Jacob came along Oct 13, 2006. He was a big, healthy baby and we were thinking we were going to be going home in a day when we got the news he was born with several CHDs (congenital heart defects) and would have to be transferred to another hospital to have heart surgery. We had no idea there was anything even wrong with him.
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Jacob had his first heart surgery at 11 days old to fix a Coarctation of the Aorta, however after a routine surgery follow up, he was diagnosed with hypoplastic aortic arch and he had to go back in for open heart surgery at 2 months old to have an aortic arch reconstruction. He also has a bicuspid aortic valve that was diagnosed originally and will have to be followed throughout his entire life to watch for leaking and stenosis -thickening & narrowing and an abnormal mitral valve.His condition is called Shones Complex Variant. But, after another follow-up appt, his cardiologist discovered he had developed subaortic stenosis, due to a subaortic membrane (left ventricular outflow tract obstruction) which will require another open heart surgery to remove it when it grows to a certain point.r it starts to leak it will have to be repaired right away. Otherwise we wait to have the pressure gradient across his valve measured every six months to see if there has been an increase. No way to know when that will be, so it's my black cloud that follows me. I will never have an appt where his cardiologist says he's fixed...our news is either "stable" or "worse", which is not the most normal way to live, but it has become our "new normal". When the membrane is removed, there is no way to predict if or how fast it will grow back again (it's like a weed) and the only way to remove it is with open heart surgery.
Jacob was also born with a congenital defect in his knee, called Discoid Meniscus. He had surgery to repair that at 2 yrs old. Another knee problem he has been going through is called Avascular Necrosis. His bone at the end of his femur was dead, causing the cartilage to be completely gone. His surgeon has never seen this in someone even close to his age before. He had a very invasive operation on April 7, 2014 to do a cartilage transplant. They took cartilage from a non-wight bearing part of his knee and transplanted it into the large space where he had non. We are now waiting to see if the transplant "took". His cartilage cells were sent to a lab in Boston. If the transplant fails, he will have his cells grown into synthetic cartilage and it will then be transplanted
I wouldn't trade this rollercoaster life, though. Jake is a blessing to us and has brought our family much closer. He is the adorable baby brother to big sister, Stephanie (20 y/o) and his new big brothers Jacob, Jordan and Griffin!