Maddox N
Georgia
Birth Date: December 18,2019
Diagnosis: Salt Wasting Congenital Adrenal Hyperplasia
Theme - Superheroes
Favorite Colors: Red, Silver and Black
Due Date: August 15, 2024
Maddox's Journey
Maddox was born, what we thought, a healthy boy on 12/18/2019. We noticed on 12/25/2019 that he wasn't wanting to eat and just wasn't acting his normal self. My husband took him to our local ER as I was recovering from a c-section and had two other children at home. Little did we know that Christmas night would flip-flop our world upside down.
After a misdiagnosis from our local hospital things became worse. I called 911 and Maddox was rushed via ambulance to the closest children's hospital. He was immediately taken into a trauma room where a team of nurses and doctors swarmed him. His heart was trying to stop and we were told to 'prepare for the worst.' My world crumbled beneath me as I fell to the hospital floor being held by a nurse - who at that time felt more like an angel.
30 minutes later the doctor came into the room to let us know that they had figured out what was going on and were going to be able to save his life. Once stable, Maddox was moved to the NICU. We found ourselves being asked to leave as they needed to put in a PICC line to administer his medications and we were sent to the Ronald McDonald House to prepare for a long stay.
Maddox was diagnosed after more tests were run with Salt Wasting Congenital Adrenal Hyperplasia which is a life threatening rare genetic disorder. In basic terms, his Adrenal Glands do not work so his body cannot produce the stress hormone Cortisol and his body does not retain Sodium.
The first year went pretty smoothly, until Maddox began having Hypoglycemic episodes in his sleep due to the replacement Cortisol dropping too low. We almost lost him again as he was unconscious for 8 hours.
He has had several hiccups since then, many doctor's appointments, many ambulance rides and visits but we continue to watch him persevere.
