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On March 4 2015, American mum Brandi McGlathery gave birth to her beautiful baby boy, Timothy Eli Thomson. But, the moment the doctors placed little Eli on Brandi’s chest, she knew something was not quite right.
Initially, doctors tried to reassure the new mum that everything had gone well. However, according to reports, McGlathery knew that her baby looked different. She finally figured out what it was and said: "He doesn't have a nose."
Eli had been born with a very rare facial anomaly called complete congenital arhinia.
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Soon after his birth he was transferred to USA Children's and Women's Hospital (USACWH), where he stayed and was monitored for around three weeks. At five days old, he received a tracheotomy to help him breathe and also nurse.
McGlathery, who was determined to try and breastfeed her little one, became the only mum to ever nurse a baby with a tracheotomy at USACWH.
She says, “He’s just like any other baby. He just doesn’t have a nose.” She adds that the lack of a nose “didn’t faze him at all.”
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Reports say that Eli is McGlathery's second child and her first with her boyfriend, Troy Thompson. She mostly had a normal pregnancy, except for around 17 weeks when she experienced severe nausea and lost a lot of weight.
She went into early labor three times before finally delivering Eli at 37 weeks.
Reportedly, McGlathery’s doctor had even reviewed all the ultrasounds and tests and had not noticed any signs that there was anything wrong with Eli, who even has a nasal bone.
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What is complete congenital arhinia?
Experts define congenital arhinia as “the absence of external nose, nasal cavities, and olfactory apparatus.” In other words, a person born with this condition has no nose or sense of smell.
This condition is so rare that there are only around 40 reported cases in the world, with only one in 197 million ever getting this condition.
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Caring for a baby with this condition
Looking after a baby with a condition such as congenital arhinia where the airway is compromised is certainly not easy. In the case of little Eli, his mum and dad need to suction the tracheotomy at least twice a day to clean it thoroughly.
They also have to regularly change the ties that hold the tracheotomy in place to avoid spit-up and milk getting caught on them, as it can irritate the skin and lead to an infection.
Also, because he can’t cry due to the tracheotomy, he wears a heart monitor that sounds an alarm whenever his heart rate increases due to crying.
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Is there treatment available?
Experts in the field of surgical reconstruction claim that correcting this condition is very demanding and needs a team of paediatric, neuro, craniofacial and plastic surgeons.
In Eli’s case, according to reports, doctors may be able to construct the nasal passages in his skull at a later stage, providing him with a functional nose. However, this procedure may not work since Eli’s soft palate did not develop fully and also because his brain is positioned lower in his head.
As an immediate intervention, doctors could provide little Eli with a cosmetic nose. But, even if his parents choose this option, Eli would still require surgery as he grows in order to adjust the nose to his face.
Whatever decision Eli's parents make, we wish this little angel all the best for an awesome future ahead! If you'd like to find out more about Eli and follow his story, do visit the Facebook page, Eli's Story.
Mums, we'd love to hear your opinion about this story. Do let us know by leaving a comment below.