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During Liane Rensing’s 20-week ultrasound, it was discovered that her baby, Mila, had a cleft lip. This diagnosis expanded when Mila was born with a right-sided incomplete unilateral cleft lip and a complete cleft palate. The first year of her life brought challenges to the Rensing family as they learned to navigate caring for Mila. “We learned how to feed and take care of her with feeding devices like special nipples and bottles,” explains Liane. “We had to figure out how to tape specifically designed appliances to Mila’s nose and forehead to prepare her for her cleft surgeries. Miami felt like our second home since we traveled there for Mila’s numerous surgeries and appointments.” In their pursuit of finding the best care for Mila as she grew older, the Rensing family discovered Nemours Children’s Health. Their first experience with Nemours Children’s was with an audiology test and sleep consultations with […]

Jason’s story began with a seemingly innocent complaint, ear pain. Concerned for her son, Andrea Salicia vividly remembers the moment she first suspected something was wrong with her son Jason. While feeding him, she noticed that he was twitching, and it didn’t appear to be normal newborn behavior. A few days later, in a terrifying incident, Jason began gasping for air during a feeding, followed by a more severe twitch. Panicked, Salicia rushed him to the Nemours Children’s Hospital, Florida emergency room. It was there that a nurse informed her that Jason’s “twitches” were actually seizures, prompting further investigation. This nurse also thought that he might have a condition called DiGeorge syndrome but didn’t want to say anything until it was confirmed. The medical team then performed a spinal tap and various tests, which led to a diagnosis of 22q11.2 deletion syndrome, also known as 22q or DiGeorge syndrome, at […]