Baby Rainn is going to have his heart customized. Why? Because he has a single ventricle heart or what is called Hypoplastic Right Heart Syndrome. This is a sporadic and rare congenital heart defect. Basically, his heart formed with the right chamber being to small to support his life. After he was born he had non-surgical procedure to put what is called a PDA stent in to support blood flow of his heart. He was hospitalized in the NICU for 11 days after birth.
After two months, he was rushed to the ER due to an arrhythmia staying 5 days in the hospital. Then 11 days later he went to the cardiologist for a routine checkup. Then Rainn was admitted and given an emergency procedure. This procedure was a larger stent placement to keep his PDA valve open until his scheduled open heart surgery.
At 4 months of his life he will need a surgery called Bidirectional Glenn. Then another surgery called Fontan at age four. Yes, that is 2-3 heart surgeries by age four.
He will hopefully go on to live a perfectly normal life like most kids. The journey getting there is going to be difficult. We are going to need lots of love and support from friends and family. Normally, we don’t like being open about our problems but this is the exception. We need our community. We love and appreciate you. Your prayers, kind words and the simplest of reach has helped us so much.
