When Brandi and Troy discovered that they were going to be parents, they were overjoyed. The happy couple wondered what kind of person their son would be, who’s features he would have, and all of the other things that soon-to-be parents daydream of. When their son Eli entered the world, they quickly realized that he was clearly missing one very distinctive facial feature–a nose. Although several ultrasounds had indicated that Eli was in perfect health, it was apparent that he was experiencing an extremely rare medical condition known as complete congenital arhinia.
For the first 5 days of his life, Eli was required to spend time in the NICU before receiving a tracheotomy to assist in his breathing. Eli is one of the only 43 cases of complete congenital arhinia known in the world today, which experts predict only affects roughly 1 in 197 million live births. Troy and Brandi are thankful that their son is healthy and doing great, and despite his absence of a nose, they feel as if their son is perfect just the way he is. Together the couple decided that they will not be considering having any kind of constructive surgery done to change Eli’s appearance.
Life is already hard enough they feel, and because of the complete congenital arhinia Eli will already require a number of surgeries throughout his life. The couple feels that that is enough to bear, and when the day comes that Eli is old enough to make his own decision on his appearance, they will fully support him either way he chooses. For now, baby and parents are doing just fine, and through research with the hospital and on her own through support groups, Brandi became the first mother to date to successfully breastfeed a baby with a tracheotomy. This precious baby is in good hands thanks to the amazing parents by his side.
Eli’s mother Brandi has created a GoFundMe page on behalf of her son to help with the cost of medical bills; here is the link if you’d like to view the page.