BIRMINGHAM, Ala. (April 2, 2015) – Last month when the doctor placed baby Eli into his mother’s arms for the first time, she immediately knew something was wrong.
“I pulled back and said, ‘Something’s wrong!’ And the doctor said, ‘No, he’s perfectly fine.’ Then I shouted, ‘He doesn’t have a nose!'” Eli’s mother Brandi told AL.com.
The doctors rushed Eli away to examine him, leaving Brandi wondering how her son was breathing.
“I did not know what was going on,” the 23-year-old mother told TODAY. “All I thought of was he didn’t have a nose and I was thinking, how is he breathing?”
Doctors diagnosed Eli with congenital arhina, an extremely rare condition that leaves babies without nasal structures or passages. Brandi says the condition affects just one in 197 million people.
Although Eli instinctively knew to breathe out of his mouth, he struggled to breathe during feedings, according to TODAY.
Doctors then gave Eli a tracheotomy to help him breathe.
“He has done wonderfully since then,” Brandi said. “He’s been a much happier baby.”
However, having a trach means Eli doesn’t make any noises when he cries, which means Brandi has to keep a close eye on him.
Before he could go home with mom and dad, the family had to learn how to clean Eli’s trach.
They also have to make sure Eli sleeps with a heart monitor, which sounds an alarm when Eli’s heart rate increases from crying.
“It makes it a lot harder,” Brandi told TODAY. “You have to stay right nearby him.”
After nearly one month in the hospital, Eli is doing great and finally gets to go home.
Initially, Brandi hoped a surgeon might someday be able to help.
“Even with a plastic surgeon building a nose for him, it wouldn’t work,” wrote Brandi on her GoFundMe page.
Doctors could give him a cosmetic nose, but that would mean he would have to have surgery as he grows to adjust the nose to his face.
Brandi says she doesn’t want to put Eli through any unnecessary surgeries.
“We think he’s perfect the way he is,” she said. “Until the day he wants to have a nose, we don’t want to touch him. We have to take it day by day.”
Brandi says Eli will need to see specialists on a regular basis.
“They will work with him for the rest of his life,” she said. “Every three to six months, we’ll be going back for scans and checkups for at least the next ten years.”
To keep following Eli’s story, visit his Facebook page.