A miracle baby called Eli who was born without a nose is one in 197 MILLION, and is one of the only children in the world with the rare facial anomaly.Little Eli McGlathery suffers from complete congenital arhinia – an extremely rare condition with only 37 known cases known.
Eli’s mum Brandi McGlathery said: “The rest of him is so cute, sometimes you don’t realise he doesn’t have a nose”
He spent his first few days in an intensive care unit battling for his life and doctors were left baffled by his condition.
When he was born, his mum Brandi told: “I said ‘something’s wrong!’ And the doctor said, ‘No, he’s perfectly fine.’ Then I shouted, ‘He doesn’t have a nose!'”
The doctor whisked Eli away, leaving Brandi alone in the delivery room at South Baldwin Hospital, Alabama, US.
She said it was only later, when the nursery blinds were opened, that the rest of her family saw the Eli had been born without a nose.
But, already showing signs that he was a little fighter, Eli started breathing through his mouth right away and, wearing a tiny oxygen mask, not having a nose “didn’t faze him at all,” she said.
He was taken to USA Children’s and Women’s Hospital in Alabama, US, and doctors were unsure whether he’d make it through the night.
He spent the first few days of his life in an intensive care unit and at five days old he had a tracheotomy.
But the “miracle baby,” surprised his parents as well as the medical staff who cared for him.
Brandi, who is also mum to four-year-old Brysen, said: says he is now doing wonderfully, and is a very happy baby.
Because of the trach, he doesn’t make noise when he cries anymore, so Brandi has to watch him all the time.
Brandi became the first mother ever to breastfeed a baby with a trach at the hospital and now a lactation consultant is using him to put an article together about breastfeeding with a trach.
Asked whether a plastic surgeon could build a nose for Eli, Brandi said they would have to wait until a later date to find out, as Eli’s palate has not formed properly.
His condition affects his pituitary gland and he’ll have to be past puberty before his nasal passageways can be built.
She said: “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.”
Within a month, Eli will travel back home to Summerdale, Alabama, but he will have to visit the Shriners Hospital for Children in Houston and Galveston, Texas, to meet with craniofacial specialists.
Brandi, who works as a bartender, said doctors will have to work with Eli for the rest of his life, including scans and check ups every three to six months for the next 10 years.
When medics researched Eli’s condition, they could only find three brief articles about it, so they are now writing a case study on him in case they ever encounter another baby like Eli.
Since he was born on March 4, Brandi has found a mother in Ireland, Gráinne Evans, who writes a blog about her daughter, Tessa, who has the same condition.
She also found a 23-year-old Louisiana native who lives in Auburn, Alabama, and a 16-year-old in North Carolina.
Brandi said she believes that Eli could not only survive his babyhood, but that he’ll grow to adulthood.
Her best friend, Crystal Weaver, has created Eli’s Story Page on Facebook, which has already clocked up over 4,500 likes.
She also started a Go Fund Me account, which has raised over $6,200.
Brandi added: “We’ve got years and years of surgeries and doctor’s appointments nowhere close to us.”