When Eli Thompson was born on March 4, weighing in at 6 pounds, 8 ounces, the delivering doctor immediately placed the baby boy on his mother Brandi’s chest. And as the doctor helped Eli’s father Troy cut the cord, Brandi looked at her baby for the first time.
“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!’”
The delivering doctor hadn’t even noticed what was so obvious to Eli’s mother — Eli was born with a rare facial anomaly called complete congenital arhinia, meaning he was born without a nose. In addition to not having an external nose, Eli does not have a nasal cavity or an olfactory system. There are only about 37 cases like Eli’s worldwide, and the chances of a baby being born with congenital arhinia is about one in 197 million.
Eli is a true miracle baby.
After Brandi cried out that something was wrong, her newborn baby was immediately taken away, and Brandi was left alone for about ten minutes agonizing over whether she had actually seen what she thought she had seen — or didn’t see.
“I was the first person to see it,” Brandi said. “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.”
But the doctor did come back with what Brandi described as “the most apologetic look.” She began to cry before he even spoke. Her partner Troy also had tears in his eyes
She had been right. Eli didn’t have a nose.
Her pregnancy, though more difficult than her previous one, had shown nothing unusual. Her doctor poured over her ultrasounds, including a 3D one, to see if he had missed anything, but he hadn’t. There had been no indication that Eli would be anything but a normal, healthy baby boy when he was born, although he was born slightly early at 37 weeks after mom Brandi went into early labor three separate times.
Eli was taken to USA Children’s and Women’s Hospital in Mobile, Alabama the night he was born where Brandi was sure he wouldn’t make it through the night. She called every 45 minutes, and Eli continued to hang on.
At 5-days-old, doctors performed a tracheotomy. Because of that, he no longer makes any noise when he cries, and so he must be watched closely at all times. But the tracheotomy has led to improvements for Eli.
“He has done wonderfully since then,” Brandi said. “He’s been a much happier baby.”
The doctors and medical staff have been baffled by Eli’s condition because it is so rare. The staff at the USA Children’s and Women’s Hospital immediately began to research the condition as soon as they knew Eli was on his way and were only able to find three very brief articles on the condition. And so Eli’s doctors are writing a case study on Eli himself.
In addition to the case study being written by doctors, the lactation consultant on staff is writing an article about Eli as well — Brandi wanted to breastfeed Eli when he got his tracheotomy and became the first mother to ever nurse a baby with a trach.
Brandi, by reaching out to the few other people and mothers of children with the same condition, has gained more confidence that Eli will not only survive, but thrive well into adulthood. But he faces some definite challenges.
Helping Eli isn’t as simple as building him a nose and creating nasal passageways. In addition to being born without a nose, Brandi explains, “His palate didn’t form all the way, so his brain is lower. It’s a wait-and-see game.”
And because his condition affects his pituitary gland, Eli will have to be past puberty before a nasal passageway can even be attempted. Until that happens, Brandi says she would prefer to spare Eli from any unnecessary facial surgeries.
“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.”
But after just three weeks in the hospital, Eli is getting ready to go home. And it seems apparent that his parents are ready for his homecoming.
“We’re going to do our best to make sure he’s happy,” Brandi said. “The rest of him is so cute, sometimes you don’t realize he doesn’t have a nose.”
But that doesn’t mean Brandi isn’t aware of the challenges her miracle baby Eli will face as he grows.
“My biggest fear for Eli is that the world won’t see him as the beautiful, brave little boy that I see him as.”
But despite facing a life of surgeries and other difficulties, Eli has a mother who obviously adores him and calls him “the most beautiful boy I’ve ever laid eyes on.”
Another baby who was born with a rare facial anomaly has made headlines this week. Read why one little girl in India is being worshiped as a goddess because of a facial protrusion here.
[Image via Eli’s Story Facebook page]