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When Lex was just a baby, his pediatrician noticed something was off about the shape of his head, leading to a diagnosis of craniosynostosis, a condition where the skull’s sutures fuse prematurely. Craniosynostosis is when one or more seams between bones in a child’s skull close too soon. When this happens, the skull can’t grow properly and develops a different shape. Despite facing multiple surgeries and challenges, Lex and his family have found unwavering support and care at Nemours Children’s Hospital, Florida. Through it all, Lex has shown incredible resilience.  “His pediatrician noticed that his head shape was not normal and immediately referred us to Nemours,” shares Lex’s mother, Courtney. At Nemours Children’s the medical team conducted a series of tests and scans. In addition to the craniosynostosis, Lex was also found to have elevated cerebrospinal fluid (CSF) pressure, pituitary gland shrinkage, and a host of symptoms, including severe headaches […]

Hudson’s persistent symptoms of pain, feeding difficulties, and faltering growth left his mother, Heather, and her husband, searching for an explanation. Hudson’s condition had taken a toll on the family’s daily life. Heather shares, “Hudson would cry and be unsettled for numerous hours in a day. He would throw up his formula, and we had tried seven different types, hoping one would make a difference.” The constant vomiting made it nearly impossible to leave the house, and Heather had to resign from her 18-year career in Special Education to focus on her son’s care. Every day was a struggle, but Heather’s unwavering dedication and advocacy for her son never wavered. Determined to find answers, Heather and her husband reached out to multiple healthcare providers. It wasn’t until a CT scan at 6 months revealed brain swelling due to severe malnutrition that the true extent of Hudson’s condition became clear. “Prior […]

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 […]

As someone who grew up in Delaware, even before I was diagnosed with type 1 diabetes, Nemours Children’s Health has always held a special place for me. During my medical school rotations, I found a mentor in Dr. Daniel Doyle, who showed me the profound impact of pediatric endocrinology. After completing my fellowship training in Philadelphia, I reached out. I was excited to learn that there was an opening for a pediatric endocrinologist at Nemours. It was the moment I had envisioned for so long finally coming to life! Beyond patient care, I’m fortunate to have the opportunity to participate in other activities, such as clinical research. This enables me to consider and investigate the issues my patients encounter, develop targeted interventions to assist them, and conduct trials to gain a deeper understanding of their disease processes, ultimately aiming to enhance their care in the future. I am so fortunate […]

18-year-old Chloe is preparing for her next chapter while continuing to manage a rare skeletal dysplasia with the support of her care team at Nemours Children’s Hospital, Delaware. Her medical journey began early, and has been shaped by expert care, community, and a team that understands her unique needs. During her mother, Cynthia’s, pregnancy, an ultrasound revealed that Chloe would be born with a form of dwarfism. These early signs prompted close monitoring and additional testing after birth. It wasn’t until she was about 1.5 years old that Chloe underwent genetic testing, confirming a spondyloepiphyseal dysplasia (SED) diagnosis. SEDs are disorders that involve both the spine and the ends of long bones. Patients with SED often experience musculoskeletal problems with the neck, spine, lower limbs, feet, and joints. As her family navigated the early stages of her diagnosis, they connected with Little People of America (LPA). While attending an LPA regional […]

Mathew’s mother, Megan, was 28 weeks pregnant when she learned her baby had Tetralogy of Fallot (TOF), a rare, congenital condition caused by a combination of four heart defects that change the way blood flows through the heart and to the lungs, resulting in less oxygen-rich blood being carried to the body. Mathew would need surgery soon after birth and Megan’s OBGYN referred her to Dr. Mehta at Nemours Children’s Health, Pensacola. “As a first-time mom, I was terrified and spent countless hours Googling all the worst-case scenarios,” recalls Megan. “But Dr. Mehta reassured me with a simple, ‘I got you.’” Sure enough, Mathew came home on Thanksgiving Day, four days after he was born. Mathew’s Surgery Three weeks later, Mathew’s oxygen saturation dropped into the 30s — he needed open-heart surgery and Megan requested a transfer to Nemours Children’s Hospital, Florida. “The patient and family care at Nemours Children’s […]