Michael was diagnosed with Hypoplastic Left Heart Syndrome at 18 weeks gestation after a routine ultrasound showed deformities of his heart. He was born August 11th, 2016 via emergency cesarean section. They whisked him away before we could even lay eyes on him. He was taken straight to the Nicu to be stabilized and placed on life saving medications.He had his first open heart surgery at only 12 days old. He came home for the very first time at 6 1/2 weeks old! ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
It wasn’t until he was 13 months old that we finally received Michael’s genetic testing results. Confirmed Kabuki Syndrome – KMT2D Gene Mutation. This Mutation is the cause for all of Michael’s defects, delays, etc. We are so thankful for his diagnosis, as it allows us to care & advocate better, for him! ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
We have been through another open heart surgery, 3 Heart caths, other minor procedures as well as a gtube, emergency neurosurgery, and so many what if’s. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
He is a fighter through and through. We are also so thankful for our family, friends, and even complete strangers who share our story, learn from it, and inform others about Michael! He will be having surgery again in February for a cleft palate defect and I know he will rock recovery! Thank you for reading a short summary all about our miracle, Michael!
Michael
