Baby Born with Life-Threatening Condition Left Him Without A Nose“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!'” she told AL.com. “I was the first person to see it. Even when they took him away, my family still didn’t know something was wrong, due to being caught up in the excitement of his arrival. It wasn’t until they opened the blinds of the nursery that everyone else saw.”

Eli was diagnosed with complete congenital arhinia—an extremely rare and life-threatening condition that left him without nasal passages or sinus cavities—meaning even if he was constructed a nose with plastic surgery, it wouldn’t work.

At five days old he had a tracheotomy and feeding tube inserted into his stomach, and since then, Brandi says he’s been a “much happier baby.” Even with the trach, Brandi has been successfully breast-feeding Eli, and she says she’s the first mother in that hospital to do so.

Doctors poured over Brandi’s medical records and ultrasounds to try to find an indicator of Eli’s condition. There was nothing unusual, other than severe nausea 17 weeks along that caused Brandy to lose 10 pounds in eight days. She was prescribed a medication to keep food down and took it throughout the reminder of her pregnancy.

Brandi and Troy even commented on how cute Eli’s nose was during an ultrasound, but it turns out what they saw was the bone where his nose should have been. Brandi went into early labor three times, eventually giving birth at 37 weeks.

When USA Children’s and Women’s Hospital learned that they had a baby with complete congenital arhinia coming to them, they immediately started to do research on how to care for that condition, but only found three brief articles. They’re now writing a case study about Eli in the event that they care for another baby with his condition in the future.

Eli’s condition also affects his pituitary gland, so if he wants plastic surgery, he’ll have to be past puberty before his nasal passageways can be built. Brandi and Troy are opting out of any reconstructive surgeries for now, and waiting until Eli himself wants to make a decision.

We think he’s perfect the way he is. Until the day he wants to have a nose, we don’t want to touch him. We have to take it day by day.

In addition to constant tests and medical care, Eli will likely be in and out of the hospital most of his young life. Brandi’s friend set up a Facebook page for support, and to update anyone who is following along with Eli’s story. There has also been aGoFundMe page made to help the family pay for medical expenses.

Despite everything the couple has gone through, all they want is some cuddle time with their baby.

Here are a few photos of little Eli…

Image Credit: KHOU

 

Image Credit: KHOU

 

Image Credit: KHOU

 

Image Credit: KHOU

 

Image Credit: KHOU

 

Image Credit: KHOU

 

Image Credit: KHOU

 

Image Credit: KHOU

 

Image Credit: KHOU

 

Image Credit: KHOU

 

Image Credit: KHOU

 

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