Adrian Mata

"Adrian’s story began before he was even born. He had a heart defect and the doctors could not figure out why he was measuring so small. I was told it would be a miracle to make it past 27 weeks and wasn’t sure if he’d survive after birth. Adrian was born full term just under 3.5 pounds at full term. Due to his small size, more specifically his small head, it was determined he would not have a good quality of life, and therefore was not a candidate for the heart surgery he needed in order to survive. He was not expected to ever walk, talk, eat, or even breathe on his own. The doctors weren’t sure if he’d even ever be able to smile. He just seemed so alert and active in the NICU and something inside me told me they were wrong. I fought with my entire heart and advocated for his life. After nearly 2 months of several meetings with the ethics board and obtaining multiple opinions throughout the US, Adrian was discharged into hospice care. He was given 2 hours to 2 days to survive since he would no longer be receiving the heart medications that were keeping him alive. Those hours turned into days, days turned into weeks, weeks into months. Three months after being disconnected from his heart medication at our front door, Adrian’s genetic testing results came back. He was diagnosed with Seckel Syndrome, a form of primordial dwarfism. Individuals of this condition have a better quality of life than was originally predicted for Adrian. This is where our Riley story begins.

I reached out to Riley Children’s Hospital for help and that was the best decision I’ve ever made for Adrian. They took on his case without hesitation. It was recommended that Adrian gain weight prior to open heart surgery with a goal of reaching 15 pounds and a g-tube was placed to help him gain weight. He was hospitalized multiple times due to several respiratory viruses. His heart could not handle any more sickness and he received open heart surgery shortly after his first birthday at 9 pounds! He had a couple complications after heart surgery and was discharged home after a 6 week stay on 13 medications and home oxygen. Adrian is now 30 pounds, 9 years old, and will be starting 4th grade. He is the most loving and happiest kid. He’s always dancing and laughing. He plays baseball as of this summer and has a GREAT quality of life! He is no longer on any daily meds or oxygen. He does still use the g-tube but starts feeding therapy this week! He does not talk, but he knows some sign language and his communication tablet should be arriving any day now! We are so beyond grateful for Riley Hospital and the exceptional care we receive there. It really is such a special place and feels like a second home! We live 2.5 hours away from Riley and Adrian has several appointments a year, but I truly couldn’t imagine ever going anywhere else. Adrian would not be here if it weren’t for Riley Children’s Hospital.”

-Adrian’s Mom Alexis