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In Good Hands: Lucy’s Story

When Michelle learned she was pregnant, she was referred to Nemours Children’s Hospital, Florida for high-risk prenatal care. From the very beginning, she felt supported by her care team. So, when her daughter, Lucy, was diagnosed with hip dysplasia at 6 weeks old, there was no hesitation about where to turn. Because Lucy was breech throughout the entire pregnancy, her pediatrician took extra precautions after birth to check for hip dysplasia. “Her pediatrician wanted to check if she could possibly have hip dysplasia, and thank god she did because we were able to treat her on time,” shares Michelle. “We were so grateful it was diagnosed so early where we as parents did not notice, and she did not feel affected by it as a newborn.” The family’s relationship with Nemours Children’s came full circle when they decided to bring Lucy in for treatment. “The treatment for myself was so […]

Jalen’s Journey with Hip Dysplasia (In His Mom’s Words)

Jalen has been a miracle since the beginning. We struggled with infertility and experienced four miscarriages over five years before he came into our lives. Each pregnancy took nearly a year to achieve, and each time, we lost the baby. During my pregnancy with Jalen, I was constantly terrified of miscarrying and prayed every day for his safe arrival. We had a C-Section scheduled for November 1, 2013, because Jalen was in a breech position. The moment I saw him and heard his cry, I felt an immense relief. He was finally here, safe and sound, and I could breathe again. That relief lasted for about a minute before I felt the fear creep back in again. I watched his newborn examination, I remember noticing they didn’t bring him over to me as quickly as I expected. The providers were focusing on his legs, and more and more of them […]

Excellent Care is Out There: Charlotte’s Story

Before she was even born, Charlotte was diagnosed with Congenital Femoral Deficiency and Fibular Hemimelia, a rare condition that would shape her life in ways her family could never have anticipated. Congenital leg length discrepancies are when patients have legs that are different lengths. Femoral deficiency is characterized by a short or missing thighbone and fibular hemimelia by a short or missing fibula. “It was an incredibly emotional and uncertain time for us,” her mother, Melissa, recalls. The news was both a shock and a call to action. As soon as they received the diagnosis, her family was determined to understand the condition and find the best possible care for Charlotte. “We knew this would be a lifelong series of surgeries, rehabilitation, and specialized care,” her father, Brian, recalls. “There was a lot of anxiety and fear about what her future would look like and whether she would be able […]

From Cast to Court: Rayne’s Story

Rayne, an active pre-teen, was participating in a fun day at school, playing a game of Capture the Flag. During the game, a sudden and unexpected fall resulted in Rayne’s leg hyperextending. The impact was severe, and her left tibia cracked at her knee. Her parents immediately rushed her to their local hospital in Lewes, DE. Upon arrival, the hospital staff performed an X-ray, which revealed the fracture. However, the fracture involved Rayne’s growth plate, a critical area that requires specialized care to ensure proper healing and prevent long-term complications. Recognizing the severity and the need for expert pediatric orthopedic care, the local doctors referred Rayne and her family to Nemours Children’s Hospital, Delaware. Without hesitation, Rayne’s parents packed up and made the two-hour drive to Nemours Children’s. Upon reaching Nemours, the family was greeted by a team of highly skilled and compassionate medical professionals. “We were terribly frightened,” Rayne’s […]

Cleft And Craniofacial Awareness Month: Lex’s Story

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 […]

Advocacy and Expertise: Hudson’s Story

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 […]

Teen girl privately discussing symptoms with a female doctor

Adolescent Well Visits: A Safe Place for Teens to Be Heard

Adolescents are at a point in their lives where everything is (or simply feels like) it’s changing all around them. They’re gaining new skills as they learn and grow; they’re taking on new responsibilities as they gain more independence; and they’re navigating new social challenges — within their families, at school, and among friends as their peer group members also mature and grow. Meanwhile, their bodies are undergoing rapid physical, mental, and emotional development. When you put it all together, this can often lead to that feeling of uncertainty that most of us experienced growing up. This adolescent uncertainty leads to three core questions that almost every teenager goes to bed wondering: These questions are fundamental to an adolescent’s development and health, which is why there are differences in pediatric and adolescent medicine. Pediatrician checkups begin to change to include more questions about mental, emotional, and social well-being. Our goal […]

National Cleft & Craniofacial Awareness Month: Dylan’s Story

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 […]

Type 1 Diabetes Patient turned Endocrinologist: Patrick’s Story

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 […]

Specialized Care, Lasting Impact: Chloe’s Story

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 […]

Facing a Rare Heart Condition: Mathew’s Story

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 […]

Annistyn’s Journey with Nemours Children’s Health, Lakeland (In Mom’s Words)

In February, our daughter Annistyn broke her humerus when she fell off a snowmobile in New York. After a visit to a local urgent care and an X-ray, we were referred to Nemours Children’s Health, Lakeland—and from that moment on, everything was handled with such care and compassion. From the very first phone call, Nemours made us feel supported. They confirmed directions, sent all documents ahead of time, and ensured our arrival and appointment were seamless and right on schedule. We were met by smiles and kind staff from the very first interaction to the last. Every person we encountered treated Annistyn like she was their own—with warmth, patience, and expertise. Under the care of Kevin Osborne, PA-C, Annistyn was put in a sling for immobilization. One thing that truly stood out to me as a parent was how they spoke directly to Annistyn about her care. They didn’t just […]

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