At just 23 weeks, William was born via emergency C-section, due to placenta abruption, and had to spend 164 days in the NICU (at another hospital).
We always knew that cerebral palsy was a possibility. However, because he had such a positive NICU experience, we were hopeful that he would come out unscathed, so to speak. Early Intervention services started in our home shortly after William was released from the hospital. His speech therapist first asked me if any doctors had mentioned cerebral palsy to us. I was reluctant to accept this very likely outcome and thus originally avoided broaching the topic with William’s doctors. Finally, at 13 months old, William was formally diagnosed with quadriplegic spastic cerebral palsy by the distinguished team at Nemours Children’s Hospital.
Before diagnosis, William’s cognitive and physical development was noticeably delayed. Having a busy daily schedule, we received Early Intervention services (speech, occupational therapy, physical therapy, vision, and special education) that changed the course of our lives.
It’s clear that our group of expert therapists, Kathleen Miller-Skomorucha, Karen Josefyk, and Mariah Graham, truly care about William and our entire family. They make decisions that are not only best for William’s outcome but also take into consideration our family’s busy lives with William’s two older siblings at home. There is a true team approach at Nemours; everyone works together to help William reach his full potential.
They are constantly assessing him to see what he needs next or what he needs more of. Sometimes he’s even had to do combined therapies; for example, OT and feeding together, or OT and PT together. While there were also a few times William needed intensive PT to help him recover from surgery. We couldn’t be more grateful for our therapeutic team which feels like family.
Dr. Shrader and Dr. Owens are another great duo at Nemours that have had William’s best interest and who continue to serve as valuable resources for us due to their knowledge and expertise.
We are also fortunate to be under the care of Dr. Petrini, who always greets William with a warm, friendly smile.
We all have big plans for William! He is a smart, funny, personable, resilient, social, and very determined 5-year-old boy.
If there are any families with a similar diagnosis, allow yourself to grieve the life you thought you were going to have and, when you’re ready, accept the reality. At that point, lean on your support system, find a group of doctors who truly care, learn as much as you can about your child’s disorder, talk to parents in similar situations and advocate for your child! Get them all of the services, therapies, medical interventions, and adaptive equipment you need to allow your child to live a full, meaningful, and happy life!
