Michael was diagnosed at 19 weeks gestation with critical aortic stenosis, small left ventricle, small mitral valve, and large VSD. We learned he would need open heart surgeries to reconstruct his heart. We flew to Boston for an evaluation shortly after diagnosis, but he was not a candidate for intervention prior to birth. We decided to return there for his surgeries because of the hospital's success rates and the high volume of complex cases they treat annually. The Louisiana Pediatric Cardiology Foundation reached out to us and we were given a grant to help with travel expenses, lodging, etc., while we were out of state for our son's care. This was extremely helpful during a challenging time for our family.
Michael was born in Boston on April 14, 2014 at 6lbs 15oz with a variant of Hypoplastic Left Heart Syndrome. He was sent straight to the NICU and then to the cardiovascular ICU at Boston Children's. His first surgery, the Norwood, was done by Dr. Ram Emani at 4 days old. All operations were performed by this surgeon and his inpatient care in Boston was led by Dr. Roger Breitbart. A second emergency operation was done at 8 days old due to a damaged tricuspid valve. His chest was open after surgery for 13 days due to swelling and to aid in his recovery. He was in the CVICU for about a month. He was not gaining weight and not stable enough to return home yet and at 3 months and 1 week old Michael underwent his 3rd open heart surgery, the Glenn. A feeding tube was also placed around this time. About a month after this operation Michael was cleared to return home to Louisiana. He was emergency air transported back to Boston twice from Baton Rouge in the fall of 2014 due to respiratory failure. There was a brief cardiac arrest in the hospital prior to the first transport. Our boy was discharged from Boston in December of 2014, but this time we decided to move to Texas in close proximity to Texas Children's hospital. We sold our home in Louisiana and called Pearland, Texas home for about two years. Michael had lots of therapies (OT, ST, and PT). He was delayed developmentally, but he sat up and crawled at about 15 months and learned to walk the month before his second birthday. We moved to Gonzales, LA on May 2016 and returned to Boston for his final planned HLHS operation, the Fontan, in November 2016. He recovered well and was discharged within 10 days. He is seen by pediatric cardiologist Dr. Ivory Crittendon at Ochsner in New Orleans. Michael started Kindergarten this fall and is doing great.
Michael has taught us so much about life and love. He defines joy and embodies a strength I never could have imagined prior to his birth. He has a contagious smile, an incredible personality, and lots of energy!