We were unaware that Michael had a heart defect until he was born with congestive heart failure and in respiratory distress. Needless to say, he was immediately placed under an oxygen tent, then directly put on a respirator in ICU. It would be several hours later before a pediatric cardiologist could examine him.
At 4:30am the pediatric cardiologist, ICU doctors, and several nurses came into my room to explain Michael's heart defect as Bicuspid Aortic Valve Stenosis. He was in very critical condition and needed to be transferred to a hospital more equipped to help him get off of the respirator to prepare him for open heart surgery.
At 11 days old, Michael came off of the respirator and was transferred to Children's Hospital in Philadelphia where he had open heart surgery at 2 weeks of age. His surgery was called a Valvotomy, which is basically cutting the stenotic bicuspid leaflets of the valve to open them up more to allow better blood flow. He did well immediately after surgery but his premature lungs kept him on the respirator for another 5 weeks following surgery. After 2 months in the hospital, Michael came home.
Michael is almost 7 years old now and will be going into the 2nd grade next month! I must brag that Michael does great in school and was named the Math Superstar in 1st grade for his class!! He now sees his cardiologist in Florida every six months to monitor the stenosis. Michael is on minimal restrictions as far as gym class at school because he experiences chest pains (angina) when he has increased activity (running, tag, biking, etc...) because of the decreased blood flow to his heart. He also wears a chest protector during gym class and even played T-ball this past spring wearing the chest protector.
Michael's future will most likely include valvuplasty and valve replacements, but for now we just focus on today and will worry about tomorrow when it gets here.
