Meet Kayden
KAYDEN’S STORY
Hailing from Missouri, Diana and Kennon Ellison have traversed through quite the journey to bring their son Kayden into the world and provide him with the medical care and intervention needed to thrive.
At their 20-week anatomy ultrasound, they received Kayden’s diagnosis of Congenital Diaphragmatic Hernia (CDH) when they discovered that his diaphragm had a large hole. This hole allowed most of his abdominal organs (liver, stomach, and intestines) to move into his chest cavity, which compromised his lung growth. Leaving that appointment, the Ellison’s knew very little about their rare diagnosis, and the future looked uncertain with a survival rate between 25%- to 50%.
On the way home from the ultrasound, they received a call from Maternity Support, a program that Diana had signed up for a few weeks earlier. The RN that was assigned to their case was alerted about our diagnosis immediately following our appointment. In what seems like divine intervention, this RN had recently attended a seminar where she had learned about a colleague of hers whose daughter also had CDH. She was able to connect Diana and Kennon to this colleague, who became their lifeline for information related to CDH. She connected the Ellison’s to resources related to CDH as well as a program at Johns Hopkins Children’s Hospital in St. Petersburg, Florida with a surgeon named Dr. Kays.
Diana and Kennon traveled to Florida to meet with Dr. Kays. During their consultation, they were relieved to learn that Dr. Kays predicted a 97% chance of survival. He also developed a plan that focused on protecting Kayden’s brain and lungs to give him the best outcome and a positive quality of life.
Following this consultation, the Ellison’s made the difficult decision to relocate to Florida to give Kayden the best chance of survival. Initially Diana and her mother moved down together, with the plan that Kennon and big brother Kyler would follow shortly. However, at 37.5 weeks, Diana went into labor and on September 18th, Kayden was born.
After delivery, Kayden was rushed to intensive care and placed on a ventilator. At 6 days old, he underwent surgery to repair his diaphragm and relocate his organs. During that surgery, it was discovered that Kayden had Heterotaxy as well as CDH, and this changed the course of the treatment and care plan.
After 78 days in intensive care, Kayden was released to the Ellison’s temporary home in Florida. Nine days later they were able to return to their home in Missouri.
The journey has been long, with many victories and setbacks along the way. According to Diana, Kayden “does things his own way, on his own time”, and throughout this ordeal, Diana and Kennon feel that they’ve had the opportunity for growth in so many ways.
The Ellison’s connected with FORE Hadley early on in their journey, and the community has been incredibly supportive. Diana noted that “The community has really stepped up in a big way, and we’ve learned that as your circle gets smaller, it gets bigger at the same time. We see things differently now. We understand how important a community is. We’ve stepped up to the challenge, and we are much stronger than we ever thought we’d be. Our mantra through this journey is “you can, and you will.”
As told to Fore Hadley by Diana Ellison aka “Mom”
About the Fore Hadley Angels in the NICU Fund
Support and proceeds for the Fore Hadley Angels in the NICU Fund will go towards assisting current and future families like Alexandria’s, by providing financial contributions to assist families with the costs associated with extended, long distance travel and living arrangements. Costs that are often a must to ensure the proper specialty care for CDH babies.