”I have to thank Children's for everything. They have become like family, and they will provide everything you need here."
Khadine Phillip was thrilled with the arrival of her healthy twin boys, Leron and Leon, into the world. However, at two years old, her son Leron was diagnosed with a heart condition called subaortic stenosis, a narrowing of the area underneath the aortic valve that causes blockage of the blood flowing through the heart. This medical condition resulted in multiple hospitalizations, surgeries, and extended stays in acute care during his childhood. Eventually, when Leron was 15 years old, he would spend 11-months at Children’s Specialized Hospital’s Inpatient Unit in New Brunswick due to his condition.
In early 2022, Leron underwent heart bypass surgery at Newark Beth Israel Medical Center and had a pacemaker device implanted. During that surgery, a complication called compartment syndrome resulted from fluid buildup in the lower extremities. They performed a fasciotomy on Leron, making a large incision into the muscle, leaving it exposed. However, that procedure had complications, and the incisions on his feet left him immobile. Post-surgery, Leron began using a wheelchair at NBI and was referred to CSH in New Brunswick for further rehabilitation. He started treatment with Pushpa Abraham, Clinical Lead Inpatient APN, and Dr. Michele Fantasia, Attending Physician, in June 2022.
Trusting the Inpatient Process
When Leron arrived at CSH, he required two staff members to roll him over and an overhead-dependent lift to get him in and out of bed. He underwent various therapies like physical, occupational, speech, and recreational therapy to get back to his daily routine and regain his ability to walk. Despite knowing that it would take time, Leron hoped that he could leave CSH walking out on his own.
Leron's road to recovery started with Occupational Therapist Jocelyn Dulanie. Jocelyn shared, “Leron was having a difficult time with his basic daily care skills due to such a long acute care stay. He required support from one to two people for all basic tasks, however by time of discharge Leron was able to complete all of his daily care tasks independently and was also working on household tasks such as cooking and cleaning up after himself.” After months of therapy, Leron's team saw progress, and his confidence was growing. He focused his efforts on learning to use his wheelchair by himself, and his team noticed a significant improvement. Jessica Middleberg, an Inpatient Pediatric Psychology Fellow, shared, “Leron truly embraced our multidisciplinary team. He knew exactly when to reach out for help, owned when he needed more support, utilized a beautiful sense of humor when appropriate, and was able to effectively collaborate with his team.”
Taking his First Steps
Leron started to make an impressive recovery, going from using a wheelchair to walking with the help of a cane. His Physical Therapist, Gianna Pianoforte shared, “After months of working on his overall strength and endurance, he progressed to standing with adaptive equipment and a Zero-G bodyweight support system, eventually getting him back to his own two feet walking and climbing stairs.”
Leron's mother, Khadine, expressed her gratitude towards Gianna, stating, "I would like to thank Gianna for her push and sternness as Leron looks up to her. As soon as she enters the room, he is up and ready to go." Leron agreed, describing Gianna as kind and professional. Jessica, Psychology Fellow, shared a special moment with Leron, "I was called to the gym, and he surprised us all by walking up the stairs for the first time. When he went up the stairs a second time to record a video for Mom, we played the "Rocky Theme Song," and when he got to the top, he put his arms in the air like the true champion he is. Mom was ecstatic when she saw the video, as were we – this was truly a pivotal moment in Leron's stay. From here, he continued to surpass every goal he set for himself."
Leron’s Kitchen
Leron made progress in walking during his rehabilitation, and his next goal was to maintain balance and stand for short periods of time. Despite feeling pessimistic at first due to the pain, his attitude changed when he began incorporating cooking into his therapy. Cooking helped him practice balance, express creativity, and spend time with his favorite therapists. Jessica, Psychology Fellow, said, “It takes a truly strong individual to accept when they need more help. Rather than shutting down in tough moments, Leron leaned on his team and found creative ways to do the things he loved to do despite the changes in his body.” Leron assigned duties to his therapists in "Leron's kitchen" during speech therapy, and his abilities improved so much that he decided he will pursue a career as a professional chef later on. He shared his favorite meals to make were mozzarella sticks, ice-cream cake, and chocolate chip cookies.
“Leron’s immense success was celebrated during his last week of CSH by walking to Tacoria restaurant for lunch with some of his team members. Leron demonstrated strength and perseverance throughout his stay. This allowed him to return home to care for himself, move his body, and participate in activities he enjoys, such as cooking,” shared Gianna, Physical Therapist. Jessica, Psychology Fellow said, “I could not be prouder of Leron in the way he embraced our team, overcame significant challenges, and accomplished goal after goal. I have no doubts that he will continue to succeed in anything he sets his mind to!”
Walking Out of CSH
Leron reflected on the past 11 months as he packed up to leave the hospital. He considered CSH his "second home," and he will miss his daily routine, mealtimes, and fun activities there. During his stay, he made unforgettable memories, including celebrating his 15th birthday with his father, therapy team, and a CSH Philly cheesesteak. Despite his initial doubts about leaving, Leron is now an active teenager who is excited to reunite with Leon and play video games and Yu-Gi-Oh outside the hospital.
For families in similar situations, Khadine advises them to ask questions and do research. As Leron's time at CSH came to an end, Khadine shared, "I always believed my son would walk out of the hospital, and Children's made that possible. At first, he couldn't do anything for himself, and that was heartbreaking. I have to thank Children's for everything. They have become like family, and they will provide everything you need here." Pushpa Abraham, Clinical Lead Inpatient APN is also proud of Leron's progress. She said, "Leron is going home having achieved his goal, thanks to his persistence, resilience, and the unwavering support of his team and family."