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Born with a unilateral cleft lip and palate, Dylan’s journey has been marked by numerous surgeries and dedicated medical care. But it’s also a story of staying positive and forming lasting connections. A cleft of the lip or palate happens when a baby is born with an opening in the upper lip or the roof of the mouth (the palate). A cleft happens when parts of the lip and/or palate do not fuse together completely. For Dylan, this diagnosis has always been a part of his life. “I can’t really remember much from before then,” he reflects. “I always had the cleft lip and palate, and as a child, I thought it was normal. Every kid went through it.” When Dylan was around 5 years old, his family moved from California to Delaware. This relocation marked the beginning of his long-term relationship with Nemours Children’s Hospital, Delaware. “My mother had to […]

When doctors delivered the diagnosis of a cleft lip, Jackson’s parents found themselves at the start of a journey they hadn’t anticipated. During Christina’s 20-week anatomy scan, they learned about the condition and immediately began exploring care options to ensure Jackson’s well-being. During this process, Christina’s previous professional background at Nemours Children’s Hospital, Delaware played a significant role in their decision-making. For 10 years, she had dedicated herself to the care and support of families at Nemours Children’s, including three years working in the surgery clinics as a Surgical Medical Assistant and had the privilege of collaborating with the cleft team. Her firsthand experience with the hospital’s expertise and compassionate care gave her a unique perspective. At Nemours, Jackson’s family discovered not just a hospital but a community of care and support. Dr. Mario Aycart, the surgeon responsible for Jackson’s cleft lip repair, was clear and reassuring in his communication. […]

An exciting birthday party took an unexpected turn when a playful game of tag ended in a traumatic injury. During the celebration, 6-year-old Joey was bitten on the face by a dog, an incident that quickly changed the tone of the day. Thankfully, his parents didn’t have to think twice about where to turn. As longtime patients of Nemours Children’s, they took their son to the place they’ve trusted for years. “We instantly knew we were in the best of hands considering the situation we were facing,” shares Joey’s mom, Shae. “Joey was in incredible pain, and his right lip was in a horrible condition. We were unsure of the severity of his situation, but we knew Nemours would be able to help him and provide him with trusted care. This was proven true upon our arrival.” “The care offered to Joey and the whole family was immediate and genuine,” […]

Dani has spent the past five years navigating life with Poland Syndrome. Diagnosed at 14, Dani’s journey took her from feeling insecure about her body to embracing newfound confidence, all with the help of the compassionate team at Nemours Children’s Hospital, Delaware. Poland Syndrome is a condition characterized by the underdevelopment or absence of chest muscles. For Dani, it began to significantly affect her during puberty. “It really started to affect me when I realized that my left breast was not growing as my other one was,” shares Dani. This physical difference impacted her self-esteem, especially during the summer when finding a bathing suit seemed impossible. “It made me very insecure, and it was hard to find confidence within myself,” she shares. Simple activities like shopping for summer shirts or feeling comfortable at the beach became daunting challenges. Dani’s connection to Nemours Children’s began with her sister, who had been […]

Meaghan remembers the early days of her daughter Addison’s life vividly. Diagnosed with a cleft palate just days after birth, Addison’s journey began with a challenge. “She was having a very difficult time breastfeeding and just didn’t seem interested in eating,” recalls Meaghan. Suspecting a possible lip tie, she asked a nurse to check Addison’s mouth. Instead, the nurse discovered a cleft palate. From that moment, Meaghan began the process of feeding Addison using a bottle with a valve. The cleft palate diagnosis impacted the Addison’s family’s daily routine significantly. With a 3-year-old son already keeping them busy, adjusting to Addison’s needs meant slowing down their usually fast-paced days. “In the very beginning, it would take about 45 minutes to an hour for one feeding,” says Meaghan. “With Addison struggling to eat, we had to take each day at a time.” However, with perseverance and patience, Addison began to improve […]

Brody’s journey with Nemours Children’s began before he was even born. During a routine anatomy scan, Beth and her husband learned that one of their twins, Brody, would be born with a cleft lip and possibly a cleft palate. “I was pregnant with twins through IVF and was sent to Nemours Fetal Care,” shares Beth. “After finding out about Brody’s diagnosis, we did a lot of research and compared to teams in Tampa. After a facetime with Dr. Kellogg to ask him questions, we knew we found Brody’s doctor and team.” Upon Brody’s birth, he encountered difficulties due to his cleft lip and palate. “Prior to surgical intervention, Brody struggled with feedings; milk would come out his nose, he drooled a lot, and I don’t think he was able to hear well,” Beth shared. These challenges emphasized the need for specialized care, which they found at Nemours Children’s Hospital, Florida. […]