From the first moments after baby Emilia was born, things did not go according to plan. The birth plan that was so carefully written, went completely out of the window when Emilia had trouble breathing. She was quickly diagnosed with a diaphragmatic hernia. Later, it was found that she had a mild heart defect as well. Although Emilia battled breathing problems and feeding problems, she seemed to defeat each obstacle that was put in her way with a big, happy smile on her face.

By the age of 16 months, it seemed as if Emilia had conquered all of her medical problems and was going to spend the rest of her childhood as a normal kid. They had even scheduled an appointment to have her feeding tube taken out. Emilia’s parents describe their little daughter and a ‘tubie who was a foodie.’ I doubt many tube-fed babies and toddlers would be described as ‘foodies,’ but little Emilia was just that. She loved to eat, and not ‘normal’ toddler foods (although she did love a good French fry). Her favorites were things like wagyu steak, scones and even octopus.

But just as everything seemed to be going perfectly for this little family of three, the unimaginable happened. A routine simple surgery led to an infection and in a matter of a few days, little Emilia, the joy of her parents’ lives, was gone. There were no more little family walks with Emilia on here dada’s shoulders, no more music coming from her bedroom, no more fun days of feeding her new foods. The house was quiet and Bryan and Claudia’s lives were forever changed.

Even though Emilia was physically gone, however, her parents wanted to make sure that their daughter was never forgotten. Living almost all of her life during COVID meant that Emilia met very few people in her life, but that doesn’t make her life any less special or important. A month after Emilia died, her mama and dada tattooed her name onto their arms. They are quite literally wearing their grief on their sleeves. The hope is that the tattoo will spark conversation and have people ask about Emilia. Bryan says, “I want to put her name on someone else’s lips for the rest of my life.” It is just one tiny way to help Emilia, the little ‘foodie’ be remembered.