Sweet little Eli and his gorgeous mum Brandi.
Image from Facebook/Eli’s Story
On March 4 2015, 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 wasn’t right.
Initially, doctors tried to reassure the new mom 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.
Eli’s condition is so rare that it occurs only once every 197 million births.
Image from Facebook/Eli’s Story
Soon after his birth, Eli 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 to also nurse.
McGlathery, who was determined to breastfeed her little one, became the only mom to ever nurse a baby with a tracheotomy at USACWH.
Eli and his doting big sister.
Image from Facebook/Eli’s Story
Eli is McGlathery’s second child and her first with her boyfriend, Troy Thompson. She had a normal pregnancy until her 17th week wherein she began experiencing severe nausea and weight loss.
She went into early labor three times before finally delivering Eli at 37 weeks.
According to reports, McGlathery’s doctor reviewed all the ultrasounds and tests but did not notice anything wrong with the infant.
What is complete congenital arhinia and how do you look after a baby with this condition? Find out on the next page.
Eli has the most beautiful smile!
Image from Facebook/Eli’s Story
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.
In order to breathe and feed, this little baby received a tracheotomy.
Image from Facebook/Eli’s Story
Caring for a baby with this condition
Looking after a baby with congenital arhinia is certainly not easy. In the case of little Eli, his mom 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.
Eli’s mum has been sucessful in breastfeeding her little boy.
Image from Facebook/Eli’s Story
Is 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, 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.
Article originally published on: theAsianparent
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