Tiffani Jones, a teaching assistant in the Illinois Special School District was expecting her first child, in early March, 2016. Unexpectedly, Tiffani contracted pneumonia in December 2015. Complications required her to be hospitalized for the remainder of her pregnancy at SSM Health St. Mary’s Hospital. Her illness lingered on and baby Konnor was born at 34 weeks on January 23, 2016. Konnor was born with cerebral palsy and had multiple feeding issues in addition to his premature age. Both Tiffani and Konnor remained at SSM Health St. Mary’s through February, each with their own milestones to achieve before discharge. Because Tiffani had been hospitalized for so long, with no assistance or resources to maintain her home, she was forced to seek alternative housing. A social worker at SSM Health St. Mary’s helped Tiffani navigate housing with family and co-workers, WIC assistance, and other resources she needed to provide a safe and supportive environment for her and Konnor. Together, Tiffani and her social worker agreed that SSM Health Cardinal Glennon Children’s Hospital would be the home of Konnor’s pediatrician and health care. Tiffani already had a great comfort level with SSM Health Cardinal Glennon from past experience. She brought her sister and nephew for appointments to see his pediatrician, Dr. Kenneth Haller, in Danis Pediatric Center. “He was only 2 pounds and premature when he was born, and now he’s healthy and 20 years old. They were always wonderful to him, and to me, when we came,” says Tiffani. “So I knew I wanted the same experience with my own child.”
Tiffani and Konnor began coming to SSM Health Cardinal Glennon shortly after their long stay at SSM Health St. Mary’s. At Konnor’s four month checkup, she met his pediatrician, Joshua Arthur, MD and social worker, Bridgette Bobo. Through a comprehensive exam and needs assessment, it was clear that Tiffani needed help with some additional resources to manage the ‘day-to-day’ life of a baby with special needs. Konnor’s cerebral palsy could likely present multiple physical and developmental challenges over the course of his life. But at his current age, it has manifested itself in some significant right-sided muscle weakness, which affected his ability to chew, swallow and process food. He also had bowel issues and sleep apnea. Occupational therapy was arranged to start right away and Tiffani was quickly introduced to multiple sub-specialists, who would all play a role in Konnor’s care management as he developed through the years.
“We’ve had lots of hurdles to overcome the last couple years,” Tiffani says, “but the two people besides Dr. Arthur who really went to bat for me early on were Bridgette and Miss Lori.” Bridgette introduced Tiffani to Lori Winkler, MSN, RN, TNS, injury prevention nurse and coordinator of Safe Kids St. Louis, at one of their first visits to the hospital. The goal was to work as a team and identify what was needed to get Tiffani the resources she would need to live and work independently and manage travel back and forth from the hospital as Konnor’s needs dictated. Bridgette began working on housing and day care options. Lori began working on the necessary resources to keep Konnor safe at home and on the road. Tiffani recalled, “It was such a blessing that Miss Lori does classes in Illinois. I was able to attend the class that Bridgette encouraged me to go to, because it was closer to where I live and easier to get to. I loved Lori’s class about safe sleeping and not only did I learn as a mom what Konnor should have, but she gave me the things I needed!”
As a participant in the 2-hour class, attendees receive group instruction, a Safe Sleep Sak, a Pack-N-Play with sheet and a large bag filled with educational videos, a child-proofing kit, a bulb suction, a baby rearview mirror, pacifier and more.
Since that class, Tiffani and Lori keep in touch during hospital visits. “Lori is always making sure I have what I need to keep Konnor safe as he’s growing and changing. Since that first class, she’s helped me get a convertible car seat for Konnor, and a humidifier when he was having some respiratory issues. She’s even gone above and beyond, assisting me to find proper day care, since many have not been able to monitor him properly for his swallowing and sleeping risks. She educated me about what to look for to keep Konnor safe and for that, and so much more, I am so very grateful.”
Konnor is now 2 years old. Once overwhelmed as a new single mom with a premature infant and complicated diagnosis to navigate, Tiffani is working full time, managing all of Konnor’s care and appointments and living with Konnor in their own place. Working as a special education assistant, Tiffani says she “takes pride in being compassionate, respectful and dedicated to the kids she cares for.” She adds, “You never want to be the mom who needs someone like me. But since I am that mom now, I have certainly learned how to advocate for the very best for my child…whether that’s his care or the people caring for him and I am truly grateful for my angels at Cardinal Glennon who have nurtured that confidence in me, and gave my son and I the tools for a good start.”