Jennifer and Justin Charles had experienced a smooth pregnancy until 27 weeks, when doctors discovered that Jennifer had lost most of the amniotic fluid around their growing baby boy.
Worried there had been a rupture in the amniotic sac, Jennifer and Justin prepared themselves for a premature birth. Further testing showed the complications were caused by a condition in the baby’s developing kidneys. But due to having little to no amniotic fluid, ultrasounds during were difficult to interpret and an official diagnosis didn’t come until the baby was born.
“We were scared, overwhelmed, confused – unaware what next steps would look like, unsure if he would be viable outside the womb at that point,” Justin says. “We prayed a lot, hoped for the best and prepared for the worst.”
Jennifer was admitted to the hospital quickly after that. She was monitored until baby Shiloh was born at 35 and a half weeks’ gestation.
“He made everyone wait to find out what was going on,” Jennifer says. “He’s had that drive since the beginning; he’s not one to go on anyone’s timeline but his own!”
Multiple diagnoses after a premature birth
Shiloh’s diagnoses include end-stage renal disease, and renal cysts and diabetes syndrome. Though still concerned about the future, Jennifer and Justin were relieved to know what was going on in Shiloh’s kidneys and to have a better picture of the journey ahead.
Shiloh’s first two years of life have included a 60-day stay in CHOC’s neonatal intensive care unit (NICU) at birth; two abdominal surgeries in his first month of life; a 90-day stay in CHOC’s Josie Y.S. Lee Pediatric Intensive Care Unit (PICU) later on; ongoing care with a variety of CHOC specialists including nephrology, gastroenterology, hematology, cardiology, endocrinology, pulmonology and rehabilitation; nightly dialysis; monthly blood draws; weekly Epogen shots to maintain his red blood cell count; a G-tube insertion for feeding; learning to swallow; and several medications. Eventually, Shiloh will require a kidney transplant, for which he is currently on the transplant list.
Shiloh’s premature birth and medical complexities meant that he might face some developmental delays. As part of Shiloh’s care, Jennifer and Justin began taking Shiloh to regular physical therapy appointments at CHOC.
Virtual visits during COVID-19
Once COVID-19 hit, however, they found that their rehab visits would have to look a little different than they had grown used to.
The CHOC rehab team turned to telehealth visits to ensure the health and safety of their patients. Rather than in-person appointments, the Charles family began seeing the rehab team via video chat.
“Telehealth requires participation and adjustments on both ends,” says Jennifer. “That looked like Dad holding the iPad to capture Shiloh’s movements and projecting our therapists onto our TV for Shiloh to see.”
The trio also had to be creative about which toys and exercises they could do from home using their own equipment, since they did not have access to CHOC’s outpatient rehab gym due to COVID-19.
For exercise, the family took walks outside, practicing on the steps in front of their house. As Easter approached, Jennifer and Justin placed plastic eggs around on the ground for Shiloh to pick up and put into a basket. They also played with a baseball, basketball and soccer ball to engage with him in a fun way.
Looking back at taking on telehealth rehab appointments at home, Jennifer acknowledges there was a learning curve, but noted how she developed an even deeper appreciation for Shiloh’s care team during this time.
“We developed so much more appreciation for how much effort the therapists put in on a daily basis, Jennifer says. “They spent time connecting with us during each session to make sure we were comfortable and adapted to what worked best for us and best helped Shiloh thrive.”
As the weeks passed, Shiloh’s parents and therapists took note of his development. Being able to work using his own toys and in his own home helped keep him comfortable.
“It gave us a chance to see even more of his personality shine through and to see him develop an even better sense of self confidence,” Jennifer says.
Despite the challenges of adjusting to a new normal in the time of COVID-19, Shiloh’s parents look back on telehealth as a great bridge for him to achieve his final physical therapy goals. He grew from crawling to assisted walking, then from unassisted walking to climbing stairs. They even caught his first steps on video, thanks to his telehealth physical therapy appointment.
Shiloh takes some of his earliest steps after learning to walk doing CHOC telehealth physical therapy appointments.
“It was wonderful being able to show our therapists the progress from appointment to appointment and to share in the excitement of his first steps together,” Jennifer says. “It was almost like getting to bring our CHOC family into our home after spending so much of our time in theirs at CHOC. Telehealth is such a great tool not just in times of quarantine but overall. We are thankful for this technology and for the rehab team being able to adapt to it so quickly and without compromising the level of care that CHOC is known for.”
Although Shiloh has graduated from physical therapy, he continues to see other CHOC specialists as he awaits a kidney transplant. In the meantime, his parents are cherishing his growth and development into what Jennifer affectionately calls her “tank of a two-year-old.”
Justin is likewise appreciating this time with his son.
“This kid is my hero,” Justin says. “His resilience is second to none. He’s a full-blown toddler, make no mistakes about that. But he is so kind and brings so much joy to everyone he meets. He carries a special light within him – that is for sure.”
