I would seek advice or treatment from three different health care providers. All would dismiss Travis’ high fever and vomiting as “it’s probably just an early case of the flu.”
Travis was our third child, our miracle and our rainbow. If you haven’t heard of the concept of a “rainbow baby”, it describes a child who is born into a family who experienced the death of a child or children. A rainbow is the light in the darkness, the hope of sunshine after the storm clouds. We felt both ecstatic to be blessed with the privilege of being Travis’ parents and terrified by the awesome responsibility of protecting and nurturing him.
Travis brought sunshine to our dark world. He brought hope, joy and so much love. He was happy, bright and full of energy. He loved entertaining people and was quickly becoming a little flirt, charming women from 2 to 92. He collected friends wherever he went and was mature beyond his years. I don’t think I’ve ever seen such an opinionated, passionate and excitable child.
A Celebration of Life
When Travis turned 4, the celebration was huge. We rented out the pool at our local community center, where Travis had taken swim lessons the last two summers. We decorated the complex with a Blaze and the Monster Machines theme and served some of his favorite foods (pizza, fresh fruit and chocolate cupcakes). He received a new bicycle, the same model as his best buddy Elliot. If you were watching this boy with the megawatt smile race excitedly through his day, you never would have guessed he was missing a major organ that would impact his ability to fight off a bacterial infection.
Just six days after his party, Travis started complaining he was cold. No one in Arizona in August ever says they’re cold. That was the beginning of the end. Within 20 hours, I would seek advice or treatment from three different health care providers. All would dismiss Travis’ high fever and vomiting as “it’s probably just an early case of the flu.”
The Final Diagnosis
When Travis died, my wonderful friend Chris (Aunt Steenie to Travis) and her husband Steve took my mom and me into their home. Travis’ death deeply impacted them, too. Other than the grandparents, Chris was the first person to visit us in the hospital when Travis was born. She didn’t know what to do but she knew we shouldn’t be alone at my house.
It was at Chris’ house where I would receive the phone call that started this odyssey fighting against Isolated Congenital Asplenia. We were sitting on the sofa in her family room when my phone rang. It was the Medical Examiner Investigator. At the hospital, he had shown us genuine compassion despite having to conduct a brutally invasive interview about Travis’ last days and hours.
The Investigator said the Medical Examiner wanted to know if Travis had ever had any surgery. Why was it everyone kept asking me this? When I confirmed Travis had no surgeries, in fact, he’d never been in a hospital other than when I gave birth to him, the Investigator dropped a bomb.
He said “If you’re sure Travis has never had any surgery or operation, then the Medical Examiner believes he was born without a spleen. It’s a condition called Isolated Congenital Asplenia. During the autopsy, she found Travis had only a small remnant of his spleen.”
I was dumbfounded.
As I repeated the words Isolated Congenital Asplenia, Chris furiously started Googling the condition. By the time I hung up with the Investigator, Chris had found out it was an extremely rare condition, and that there was an 18-month old little girl (Daisy) in England who, like Travis, developed a sudden high fever and died just hours later.
Chris also texted an update to her family. Her brother said “There has got to be something she has to do with this. There’s got to be a reason she has lost so much. I don’t know yet what it is, but she’s still here for a reason.”
Raising Awareness of Isolated Congenital Asplenia
There is still much to learn about Isolated Congenital Asplenia, but together we are working on it. Our Scientific Advisory Board continues research on this rare disease and friends and families just like you are helping spread awareness and raise funds to further research. Please consider joining the T.E.A.M.!