CDH Awareness, CDH Support, Congenital Diaphragmatic Hernia

Caleb and Cara Toney

They say two halves make a whole, but in the case of Caleb and Cara Toney it ended up being more like 99.1% - more on that to come. After years of infertility, the Toney family was thrilled to learn they had twins on the way and while any twin pregnancy is high risk, theirs took a scary turn when it was discovered at 28 weeks their son Caleb had a left sided instance of CDH. Albeit confused and scared, the family remained HOPEFUL and in no time at all the twins made their arrival - Cara was born first, perfectly healthy, and Caleb followed shortly thereafter – ready to immediately begin his fight!

Most of those initial days were focused on Caleb, who was being cared for at UF Shands. CDH is often a “one step forward, two steps back” battle and Caleb’s case was no exception. On the fourth day of his life, a significant brain bleed was detected, and his parents were posed with the question no parent should ever have to be asked, “Would you like us to continue life support?” The family knew they had a fighter, it was not his time, so they watched him fight with the assistance of ECMO for 21 days. While ECMO gave Caleb life, it also ended up taking a little something too - 10 little somethings to be exact. Due to clotting issues throughout his NICU stay, Caleb would go on to lose part of each of his toes – in his words, a very small price to pay. Hence the 99.1% - Toeless Wonderboy he’s been dubbed!

The Toney Family know firsthand it takes a village and the time and resources they needed to focus on bringing their newborn twins’ home was only possible with the help of countless friends, family, and often complete strangers. It’s something that Cara and Caleb have appreciated from a young age, and Cara has gone on to take the desire to give back to the extreme – volunteering for literally dozens of organizations and graduating high school with an astounding 1,300 HOURS(!!) of community service. Sister and best friend, stellar student (4.25 GPA), volunteer extraordinaire, and an advocate for CDH – we have no idea where she finds time to sleep!

Caleb has chosen to study Healthcare Administration at the University of North Florida, while Cara will be studying Civil and Environmental Engineering at Florida State University – we wish them both the absolute best and know they will continue to be great representatives of Fore Hadley and the entire Congenital Diaphragmatic Hernia community!


Research Funding


Angels in the NICU