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Nemours Children’s Health, Delaware Valley

National Cleft & Craniofacial Awareness Month: Jackson’s Story

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. […]

Care You Can Trust: Emerson & Lilly’s Story

For Latisha, osteogenesis imperfecta (OI) has always been a part of life. Diagnosed around age 6 after multiple leg fractures, she knew the challenges that came with the condition. When she became a mother, she was determined to find the best possible care for her children. That search let her to Nemours Children’s Hospital, Delaware – the same place she had come to trust for her own care. Her children, Emerson and Lilly, were both diagnosed with Type 1 OI at birth. “Without the care from Dr. Franzone and the entire OI team, I’m not sure where my kids would be,” Latisha shared. OI, commonly known as brittle bone disease, is a genetic disorder that prevents the body from building strong bones. For Emerson, those fractures started early – he broke his leg three times in just one year after learning to walk. Lilly also faced fractures within months of […]

Scoliosis Awareness Month: Sadie’s Story

During the first few weeks of her life, Sadie’s parents noticed that she wasn’t meeting growth milestones. After several visits with her pediatrician and other specialists, she was ultimately admitted to a local children’s hospital where she underwent multiple tests to determine the cause. “They found an ovarian torsion that had caused a large mass in her abdomen that was removed during emergency overnight surgery,” shares Sadie’s mother, Ashley. “We hoped that surgery would be the end of the road for her medical complexities, but it turned out to be only the beginning. While she was still in the hospital, she was also diagnosed with torticollis, and upon further orthopedics follow-ups, it was realized that she had both hip dysplasia and scoliosis. Due to the number of diagnoses she had already accumulated within her first six months of life, she was referred for further genetic testing. A whole exome sequencing […]

Teamwork and Expertise: Karinda’s Story

Diagnosed with microtia at birth, Karinda’s hearing was immediately tested. The results confirmed that she had hearing loss due to bilateral microtia and atresia. Microtia is a congenital condition where the outer part of the ear (the pinna) is smaller than normal and may have an unusual shape. In bilateral cases, both ears are affected. After spending 8 days in the NICU, Karinda was transferred to Nemours Children’s Hospital, Delaware where her family first met the team that would guide them through a long-term care journey. From the start, it has been a collaborative effort among expert Nemours Children’s specialists to provide Karinda with the best possible care. Now 8 years old, the most recent step in Karinda’s treatment has been ear reconstruction surgery. This procedure has brought together Nemours physicians from across the country including Dr. Angelo Leto Barone from Orlando and Dr. Mario Aycart from Delaware. Karinda has […]

RCDP Awareness Day: Maddie’s Story

The day Maddie was born, doctors performed an X-ray to investigate fluid in her lungs. During this X-ray, they discovered signs of Rhizomelic Chondrodysplasia Punctata (RCDP). This rare condition, which affects bone growth and can lead to orthopedic and developmental challenges, was confirmed a few weeks later through bloodwork. With the help of Nemours Children’s Hospital, Delaware pediatric specialists and cutting-edge research, Maddie and her family have found a community that understands and supports them. “We were introduced to Nemours Children’s in 2017 by RhizoKids International,” shares Maddie’s mom, Jenna. “Through this partnership, we connected with the Nemours team and specialists focused on RCDP. This led to our involvement in the development of the RCDP Natural History Study, an important step in preparing for clinical trials of synthetic plasmalogen.” Maddie and her family have been actively involved in the RCDP Natural History Study conducted at Nemours, attending visits every six […]

Rocco’s Journey with Nemours Children’s (In Mom’s Words)

We were at our favorite skate park with friends when my son, Rocco, fell off his skateboard and hurt his leg. We headed straight to the ER, where we found out that Rocco had a closed triplane fracture of his right ankle. While in the ER, they also noticed his blood pressure was high. My first thought was, ‘He just broke his ankle, of course it’s high.’ But the nurse insisted that we make a follow-up appointment with his pediatrician. After a few days of Rocco being home, we checked his blood pressure, and it was still very high. So, we made an appointment with the pediatrician. Rocco’s father was 13 years old when he went into kidney failure. Because of this family history, I asked them to do a full kidney workup on Rocco. A day later, we received a phone call asking us to go to our local […]

MPS Awareness Day: Eddie’s Story

Eddie has been a patient at Nemours Children’s Hospital, Delaware since he was just 2½ years old. Now 21, he’s spent nearly two decades navigating Morquio A syndrome and making trips to Delaware from Wisconsin to receive the care he needs. His journey began when his parents noticed developmental differences. “I was 2 years old, and my mom started worrying about my chest bone because it looked abnormal,” shares Eddie. For the next nine months, his family saw many different doctors to seek answers. Finally, they discovered a doctor who immediately recognized his symptoms and diagnosed Eddie with Morquio, and recommended they see Dr. William Mackenzie at Nemours Children’s. Morquio A syndrome (also known as mucopolysaccharidosis IVA or MPS IVA) is one of a group of disorders called mucopolysaccharidosis (MPS). In MPS, there’s either not enough of the enzyme that breaks down a type of sugar called glycosaminoglycans (or mucopolysaccharides) or none at all. […]

OI Awareness Week: The Benyo Family

When Carrie Benyo’s femur broke at just eight weeks old, her family wasn’t surprised. Osteogenesis Imperfecta (OI) ran in their family, and Carrie quickly became familiar with the challenges that came with it—multiple fractures and the need for specialized care. So when her daughter, Vaeda, was born, Carrie didn’t wait for the first fracture to seek answers. Through cord blood testing at birth, Vaeda was diagnosed with OI Type 1 when the results came back just four weeks later. Determined to find the best care for her daughter, Carrie discovered Nemours Children’s Hospital, Delaware, a nationally recognized leader in OI treatment. “I wanted the best specialists I could find for her,” shares Carrie. What started as a search for Vaeda’s care soon became a turning point for Carrie, too. “When they said they could treat me too I started seeing them as well. Before that I did not have routine […]

Making a Comeback: Cole’s Story

For 14-year-old Cole, sports have always been a huge part of life. Whether it’s football, wrestling, basketball, or lacrosse, he thrives on the competition and camaraderie of being part of a team. But with one play, Cole’s season was brought to an abrupt halt. “I was playing football, went to make a tackle, and my knee buckled,” Cole recalls. His coaches and the team mom suspected right away that it was his ACL. An MRI confirmed their fears—Cole had torn his ACL and meniscus, injuries that would require surgery and months of physical therapy. Cole’s family knew exactly where to turn. As a baby, he had spent time in the NICU at Nemours Children’s Hospital, Delaware, so when it came time to find expert care for his knee, Nemours Children’s was the clear choice. Under the care of Dr. Su and his team, Cole underwent surgery that rebuilt his ACL […]

OI Awareness Week: Koa’s Story

When Viana first walked through the doors of Nemours Children’s Hospital, Delaware, she felt something she hadn’t in days: relief. Her son, Koa, had been diagnosed with osteogenesis imperfecta (OI), a rare genetic disorder often called “brittle bone disease.” Before Koa was even born, doctors warned Viana that his chances of survival were low. “Almost every doctor I saw just gave me the same answer, that he wouldn’t live,” she shared. But Viana believed in her baby – and found a team at Nemours Children’s who believed in him, too. Now one year old, Koa is doing more than surviving, he’s thriving. Thanks to specialized OI care, bone-strengthening medications, and the compassionate support of his OI team including medical care and orthopaedic care, Koa is living a full and joyful life. Though OI can be life-threatening, new research from Nemours Children’s is shedding light on a more hopeful future for […]

Chasing Dreams: Lizzy’s Story

For 15-year-old Elizabeth, softball has always been more than just a game—it’s a passion. As a high school varsity catcher and a dedicated travel ball player, Lizzy had her sights set on playing at the collegiate level. Then came a play that changed her season. During a game, Lizzy was catching when a runner crashed through her left arm, leaving her with a superior labrum anterior and posterior tear and a small rotator cuff tear. The injury sidelined her, keeping her from the sport she loved and limiting her daily activities. Lizzy was taken straight from the field to Nemours Children’s Hospital, Delaware where initial tests ruled out broken bones. However, with persistent pain and swelling, an MRI was scheduled the following week. The results revealed a labral tear, leading Lizzy to Dr. Alvin Su at Nemours Children’s Health, Deptford. From the start, Dr. Su and his team approached Lizzy’s […]

Finding Support: Frankie’s Story

At just 5 years old, Frankie is already proving that determination knows no bounds. Born with Arthrogryposis Multiplex Congenita (AMC), she has trouble with her joint moving the way it should. But with the expertise of the orthopedics team at Nemours Children’s Hospital, Delaware – including Dr. Jennifer Ty for upper extremities and Dr. Reid Nichols for lower extremities – Frankie has gained strength, confidence, and the tools she needs to thrive. During her mother, Lindsay’s, 11-week ultrasound, doctors noticed an unusual positioning of Frankie’s arms. This was a moment that changed everything for Lindsay and her family. “The rest of the day is a blur,” Lindsay shares. “We started genetic testing, but there were no solid answers. It was very overwhelming.” Uncertainty followed Lindsay and her family throughout the pregnancy, with no definitive diagnosis until Frankie’s arrival. But one pivotal meeting at 36 weeks helped to ease some of […]

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Page 2 of 10

Page 2 of 10