Alabama toddler born without a nose, called a “miracle baby,” dies at 2

MOBILE, Alabama — Timothy Eli Thompson was born on 4 March 2015 at South Baldwin Hospital in Foley without an external nose, nasal passages or sinus cavities. The diagnosis was complete congenital arhinia, an extremely rare malformation. Medical literature has documented only a few dozen cases worldwide; family and early news reports often cited a figure of about one in 197 million births.

His mother, Brandi McGlathery, saw it first. The delivering doctor said the baby was fine. She said he had no nose. Eli breathed through his mouth from the start. At five days old, at USA Children’s & Women’s Hospital in Mobile, surgeons performed a tracheotomy so he could breathe and feed more safely.

McGlathery and Eli’s father called him perfect as he was. They wanted to spare him extra facial operations unless he later chose reconstruction, which doctors said would wait until after puberty, when facial growth could support new nasal passages. A Facebook page, Eli’s Story, and a fundraiser drew support from around the world. At seven months he met Tessa Evans of Ireland, another child with arhinia.

He used baby sign language. His favorite sign, his father Jeremy Finch later said, was “cookie.” He gave fist bumps. People called him a miracle baby because he had survived a condition that often brings immediate respiratory crisis.

On 3 June 2017, three months after his second birthday, Eli died at Springhill Medical Center in Mobile. Finch wrote that they would never make sense of it, and that he was blessed to have had him. The family did not publicly detail the final medical events. Children with arhinia and a tracheostomy remain at high risk from airway problems, infection and related complications.

Congenital arhinia is now known in many cases to involve mutations in the gene SMCHD1 and can form part of Bosma arhinia microphthalmia syndrome. For Eli’s parents, the science mattered less than the child they brought home: a boy without a nose who sneezed anyway, and who lived two years in full view of a public that had never seen a face quite like his.

Sources

• AP News / AL.com, Brandi McGlathery interviews, March–April 2015
• CNN, “Miracle Baby born without a nose dies,” June 2017
• AL.com, Michelle Matthews, hospital course and 4 June 2017 obituary reporting
• TODAY and Fox News contemporaneous birth coverage