- Central Florida Division External Communications

An article written by Jeff Cousins.
ORLANDO, Fla. – I never imagined I would work in a hospital. Throughout my childhood I dreamed of working in a newsroom. It was my passion, so I spent my high school years as the anchorman of our school newscast. I earned a bachelor’s degree in Radio-TV Communications and spent more than 20 years at WESH-TV in both broadcast and online journalism.
But life happened, and my world changed. I will never forget the day my wife, Paige, and I went for a routine ultrasound on our baby. It was supposed to be a joyous occasion, but something wasn’t right. It was taking a little too long. The ultrasound technician wouldn’t say much, and we were told to wait to talk to the doctor.
We ultimately learned that our son, J.P., who was just 23 weeks old at the time, had cerebral palsy, specifically holoprosencephaly, and he wasn’t expected to survive birth.
We were encouraged to terminate the pregnancy. The doctors said my wife’s health was at risk by continuing to carry him, and we only had a limited time to get an abortion.
This was our third attempt to have a baby, and we decided to stand up for him and see what God had planned for our son. We moved to AdventHealth and were surrounded by a team that was ready for whatever would happen at birth.
J.P. survived birth, and many people began to call him a miracle baby. He scored nine on his APGAR test. He didn’t even have to go to the NICU after birth. Tears of joy flowed freely.
I wish I could say that’s the end of the story, and we all lived happily ever after. But this is life, and we all face challenges every day.
Throughout the years I noticed the important role I was playing in J.P.´s treatment, making sure I communicated with the medical team what I really wanted for my son. The hospital team also valued that role, which led to the opportunity to join their team as a family-centered care consultant at AdventHealth for Children.
We learned a few days into his life that J.P. has hydrocephalus and would need a ventricular shunt to drain spinal fluid from his brain. He also has diabetes insipidus, which means he needs medicine to manage the sodium level in his body. A few years later, he was diagnosed with epilepsy.
Being the father of a medically complex child can be challenging, but it’s important to look past all the health issues and remember that, like so many other children with similar circumstances, my son is just a kid who wants to be loved and have quality time with his family.
J.P. loves books and music. He likes to have his teeth brushed. He has a crush on one of his nurses and likes mom and dad to find other things to do when she’s on shift. He enjoys school, visiting the library, and somehow – on his own – decided that frogs are cool.
Parents can share things like this to help the care team make hospital stays less scary for their kids. Knowing a child’s interests can help doctors and nurses connect with them on a personal level and gain trust.
As parents focus on their kids at the hospital, please know that I’m working to make sure they’re heard when they’re sharing valuable information with the doctors.
Jeff Cousins is a family-centered care consultant at AdventHealth for Children who helps parents understand the role they play in their child´s care, while advocating for their needs in front of the medical staff.
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