When I was 18 weeks pregnant, I found out that Waylon would be born with spina bifida.

Waylon was born 6 weeks early at OSF HealthCare Children’s Hospital of Illinois on his own terms. My water broke as I was getting ready for my baby shower and Waylon came into this world screaming about 90 minutes later.

Waylon’s spinal cord was outside of his body but was luckily protected by a large fluid filled sac. The sac did rupture during my emergency c-section but fortunately his spinal cord was still covered by a thin layer of protective coating. At 18 hours old, Waylon went into surgery to have his spinal cord placed back inside of his body and he received synthetic skin to cover his lesion. He spent 2 weeks in the NICU due to his lungs not being fully developed and to ensure that his surgical site was healing properly.

Since Waylon was born, he has received 7 surgeries with his 8^th happening later this year. His surgeries range from brain and spinal cord surgery to orthopedic surgery on his toes. Due to Waylon’s “level” of his lesion, he does walk with ankle-foot orthotics and does need some assistance with bathroom needs. Spina Bifida is known as the snowflake birth defect because all cases are different.

As OSF Children’s Hospital of Illinois’ “Miracle Kid” for the first time in his life, Waylon gets to celebrate his differences while still just being a kid. The Children’s Miracle Network partners are so eager to ensure that Waylon is supported and involved in activities that he would not get to do in a normal setting. He has been given the opportunity to run a cash register, make ice cream desserts, learn the ins and outs of emergency vehicles, and help professionally wash cars. Waylon is so proud to represent OSF Children’s Hospital of Illinois and will tell you all about the money he has helped raise to make sure all children receive the care they need. Whenever we drive by CHOI, he says “there’s my hospital!”.

Even though we have spent countless hours in the hospital and clinic, we always leave with love and gratitude in our hearts. Waylon looks forward to clinic days because he gets to see his favorite nurse and doctors. From the humongous cookies that are brought in for the patients, to being able to assist in his own care plans, Waylon always feels special on clinic days. We are typically in clinic from about 4-6 hours since he has imaging done as well so the days are long; but he always leaves smiling.

If we did not have these crucial services at CHOI we would be traveling at least 3-4 hours away to receive care in a hospital that we are not familiar with. I was born at OSF Saint Francis Medical Center, and all of my children have received care from CHOI.

We know the halls and we know the staff by name. I know that I can pick up the phone and call one of his nurses and they will know the special needs that Waylon has. We still don’t know what the future looks like for Waylon…but we do know that we will be receiving all his care at Children’s Hospital of Illinois!