Jessa Davis landed in the hospital at just 3 weeks old because she stopped breathing. She’s been admitted to the hospital 11 times in just under 2 and a half years of life with at least 1 more planned admission this year. She’s seen multiple specialists in Akron Children’s departments including ENT, gastroenterology, endocrinology, Rehabilitative Services, cardiology, ophthalmology, allergy/immunology, physiatry, developmental pediatrics and neurology. She is scheduled to add neurosurgery to her care team in August. But with a strong support system and an army of medical providers by her side, Jessa progresses every day.
“When she was 6 months old, she just stopped growing,” Jessa’s mom, Rebecca, said. “I contacted the Akron Children’s gastroenterology department. The first step was a swallow study because of the noises she would make any time she would take her bottle. The study showed she was aspirating into her airway, so she wasn’t getting ample nourishment.”
Jessa started physical therapy because she wasn’t crawling by the time she reached her first birthday. Help Me Grow, an Ohio Department of Health program that promotes child growth and development, revealed Jessa had developmental delays as well as significant gross motor delays.
Things finally started to turn around for Jessa in October 2018. She had a nasogastric tube (NG tube) placed, which is a tube that carries medicine and food to the stomach through the nose. “The NG tube and growth hormone injections she started receiving had an instant impact,” Rebecca said. “She grew 4 inches and gained nearly 4 pounds in just under 7 months. She has caught up developmentally, so much so that developmental pediatrics no longer feels the need to see her on an ongoing basis.”
Jessa has intolerances to soy, dairy, corn and is gluten-free. She had the NG tube replaced in February with a gastrostomy tube (G-tube) to deliver nutrition directly into the stomach. These changes have delivered positive results. “She used to be the most miserable child, but not anymore,” Rebecca offered. “She’s one of the happiest kids. She loves to talk and smile; she’s genuinely a joy to be around.”
Madelin, Jessa’s 4-year-old sister, loves her little sister. “Madelin is affectionate and wants to be Jessa’s best friend,” Rebecca said. “She’s is always looking out for Jessa and ‘mothering’ her. Sometimes a little too much!”
Rebecca has gotten so used to Jessa’s medical issues and appointments that it feels like “normal life” now. “Patience has never been my strong suit,” she shared. “But I’ve had to learn to be both patient and flexible because our plans change constantly.”
The past few years have felt overwhelming at times – but Rebecca and her husband, Rob, have received much-needed support from family and friends. “My mom lives nearby and watches Madelin often when I’m at the doctor with Jessa,” Rebecca said. “Our friends have been amazing: dropping off meals at home, bringing coffee to the hospital and doing whatever they can to encourage us.”
Rebecca and Rob take Jessa to specialty care at the new Akron Children’s North Canton Health Center whenever possible, and they have made countless trips to the Akron campus. Jessa also receives primary care at Akron Children’s Hospital Pediatrics, North Canton. “Regardless of the location,” Rebecca said, “everyone at Akron Children’s loves on Jessa.”