When Brandi McGlathery looked at her newborn son for the first time, everything was “perfect.” He had five fingers on each hand and five toes on each tiny foot, nothing was missing — except for his nose.
“I had been in labor for 23 hours with him, to be honest I thought I was hallucinating when I noticed that he didn’t have a nose,” McGlathery told USA TODAY Network on Thursday.
In the chaos and excitement of the delivery room, the doctors didn’t notice Eli’s nose was missing until McGlathery pointed it out.
Eli was born in Alabama on March 4 to McGlathery and her boyfriend, Troy Thompson.
The baby has congenital arhinia, a condition so rare that McGlathery was told there are only 37 cases in the world.
He has no external nose and is also missing his naval cavity and olfactory system, which allows humans to smell.
McGlathery said Eli immediately knew how to breathe through his mouth though he struggled to breath when breastfeeding. The baby was taken to USA Children’s and Women’s Hospital in Mobile, Ala., where doctors gave him a tracheotomy to help him eat without struggling for breath.
Caring for Eli isn’t easy.
McGlathery says that each day she and her boyfriend need to suction and clean the tracheotomy to ensure it doesn’t become dirty or infected. And the hospital bills keep piling up.
While insurance pays for some of the costs, she says there are so many question marks about the rare disease that procedures like reconstruction surgery for his nose may not be covered.
“This condition is so rare, they don’t know what treatments work and they are skeptical of reconstruction surgery because it’s ‘cosmetic,” McGlathery says.
Despite the costs, McGlathery says they are looking into possible reconstruction surgery.
She says the family is traveling to see specialists in Texas within the next month.
Depending on whether the surgeons are able to structure bones for a nose and nasal passages, Eli could one day have a nose, “but it won’t look complete until he finishes puberty, because the nose has to grow with him,” she says.
A friend of the family helped set up a GoFundMe account for Eli’s medical care, and almost $19,000 has been raised to date. McGlathery says she is “terrified” about the future, and her “biggest fear” is that Eli will have to deal with bullying.
“All we can do is love him, and let him know that he is special and beautiful to us and pray that what we do at home is enough to outweigh the bad things people will say about him as he grows up,” McGlathery said.
