Baby Ray

Cerebral Palsy & Autism

St. Louis Children’s Hospital

Baby Ray's Story

When Baby Ray’s mom, Robin, went into labor a little over halfway through her pregnancy, doctors told her it would be a miracle if her baby survived. When her own health took a turn for the worse during delivery at Barnes-Jewish Hospital she was placed in a medically induced coma and did not meet her son until he was 3 days old. Baby Ray was transferred to the Newborn Intensive Care Unit (NICU) at St. Louis Children’s, just a short skyway walk from the labor and delivery unit. He was so small he could fit in the palm of her hand and it was clear the situation was extremely serious.

Every NICU journey is unique, but the family-centered design enables St. Louis Children’s to care for around 1,500 infants each year. Baby Ray endured his first surgical procedure at only 9 days old. He continued to require intense medical care in the days and months that followed including heart surgery, eye surgery, lung procedures and intervention to correct gastrointestinal issues due to his premature birth. Baby Ray was on oxygen for more than three years and he battled issues such as floppy airway and lacking a coughing mechanism that allowed him to eat properly. It was during this time that he suffered two brain bleeds, which continue to affect both his speech and motor skills today.

Baby Ray has proven since a young age he has a strong fighting spirit and it’s still a big part of his personality. With current diagnoses that include cerebral palsy, autism, chronic lung disease, sensory processing disorder and ADHD, he continues to beat the odds that are against him. Robin says she was told Baby Ray would never be able to walk or talk, and now he is an energetic boy doing both of those things. When he couldn’t verbally communicate by age 3, his care team at St. Louis Children’s arranged for him to receive a communication device. It helped with his development, and Baby Ray’s first words followed a short time later when he told his older sister that he loved her.

Now 8 years old, Baby Ray is a passionate enthusiast of Disney movies, singing, dancing and spending time at church. According to his mom, he continues to meet milestones on his own timeline. He attends the Cerebral Palsy Center at St. Louis Children’s regularly and receives weekly therapies such as occupational therapy, physical therapy, speech and behavioral therapy.

Robin says she is grateful for not only Baby Ray’s medical care, but also the support provided to her family during those first weeks and months. Robin lost her job shortly after Baby Ray’s birth and the Center for Families provided resources for her to update her resume and search for jobs, as well as apply for Medicaid since she was concerned about Baby Ray’s medical coverage. The Family Care Fund relieved stress and provided “breathing room” with meals and transportation help for Robin while she was also raising her 16-year-old daughter. Robin says she doesn’t know where their family would be today without the care and compassion of the team at St. Louis Children’s.

How CMN Funds Help Baby Ray and Kids Like Him:

Navigating a preemie’s healthcare journey is already challenging and traumatic, let alone when it is coupled with the loss of income and stability. St. Louis Children’s Center for Families and Child Life Department provided support to Baby Ray and his family in more ways than just medical care. Baby Ray continues to attend music and movement class through the Cerebral Palsy Center and recently participated in a dance recital, with a Disney theme of course.