All loving parents think their child is one in a million. But new parents Brandi McGlathery and Troy Thompson have the medical data to back it up.
In fact, their infant son Eli, born without a nose due to an extremely rare condition called congenital arhinia, is actually one in 197 million. One of only 41 known cases around the world, Eli has no external nose, nasal cavity, or olfactory system, which is what gives people a sense of smell.
“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,” McGalthery told USA Today.
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After pointing it out to the doctors, who hadn’t noticed during the chaos of delivery, they rushed Eli off to intensive care. He was later transferred to the USA Children’s & Women’s Hospital in Mobile, Alabama, where the similarly surprised doctors gave him a tracheotomy to help him breathe. Though has no trouble breathing through his mouth, he can't get air during breastfeeding.
Now at home after a month in the hospital, McGlathery and Thompson are learning how to care for their special little boy. Because of the tracheotomy, they have to suction and clean it every day to make sure it doesn't get infected.
And the medical bills—current and future—are beginning to daunt them. While the tracheotomy will likely be covered by their insurance, the new parents are worried about the costs of medical expenses down the road.
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“This condition is so rare, they don’t know what treatments work and they are skeptical of reconstruction surgery because it’s ‘cosmetic,’” McGlathery said.
The hope, however, is that doctors can eventually make nasal passages in his skull, allowing him to breathe, but because Eli’s soft palate didn’t fully develop and his brain sits lower in his head it may not be possible. He also has lowered testosterone and his pituitary gland isn’t functioning correctly. A family friend has already set up a GoFundMe page to help offset the costs of his care.
And while doctors could give Eli a purely cosmetic nose, they would have to repeatedly adjust it surgically as he grows up, something his parents aren't sure is worth the stress that multiple procedures would entail.
“Troy says all the time, ‘I think it gives him character,’” McGlathery told Today.com. “We think he is perfect as is.”