Guest Contributor, Author at Nemours Blog | Expert Health and Wellness Guidance for Parents

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Dwarfism Awareness Month: Emma’s Story

Megan and Brian were overjoyed when they learned of their pregnancy with Emma. Like many expectant parents, they were filled with excitement and anticipation. However, their journey took an unexpected turn during a routine 24-week OB/GYN visit. Their doctor noticed that Emma’s growth had dropped significantly to the 3rd percentile, a development that immediately raised alarms. “It was recommended we see Maternal-Fetal Medicine specialists on account of the high-risk pregnancy,” share Megan and Brian. “After several more visits and an amniocentesis, we learned that Emma had achondroplasia, about one month before she arrived.” Achondroplasia is the most common skeletal dysplasia leading to disproportionate short stature. “We are both average height parents and do not have any family history of achondroplasia, so we did not know a great deal about the condition until we met our sweet Emma,” share Megan and Brian. In Emma’s case, her achondroplasia was caused by a […]

Care that Inspires: Owen’s Story

When 8-year-old Owen was bitten by a dog, his lower lip was nearly torn off, turning a peaceful evening into a night of uncertainty. With his parents out for a date night, a family member rushed him to the local emergency room, but it was clear that the extent of Owen’s injuries required specialized care. Shortly after, Owen was swiftly transferred to Nemours Children’s Hospital, Delaware. His mother, Alicia, recalls their first encounter with the Nemours Children’s, “We started in the emergency department at Nemours, and everyone was so great with him,” she says. The immediate care and the compassionate approach of the care team provided the family with a sense of reassurance during a highly stressful time. “We got admitted that night with a plan of having surgery the next day,” says Alicia. It was then that they met Dr. Caterson, Division Chief of Plastic Surgery. “He was phenomenal. […]

Navigating Complex Urologic Care: A Family’s Journey

Abigail and Vivian’s path to Nemours Children’s was paved by challenges, each step bringing them closer to the answers they needed. Abigail, now 15 years old, was born with a neurogenic bladder, a condition where the bladder does not function properly due to nerve damage or dysfunction. This issue became apparent when the family started potty training her. For Abigail, this meant frequent accidents, infections, and discomfort, which were distressing for her and her family. Though it seemed like a common and simple problem in a young child, her mother, Brittany, recalls, “I just felt like there was something more here. So, everyone agreed, ‘You need to go to the best children’s hospital.’” Despite initial hesitation, she knew she had to seek expert care for her daughter. “For us, driving to Nemours is about an hour and a half each way. At first, I was hesitant because of the distance, […]

Back on the Ice: Jeffrey’s Story

Diagnosed with hemihypertrophy and leg length discrepancy at just 9 months old, Jeffrey has undergone a complex medical journey, spanning over a decade. His family chose Nemours Children’s Hospital, Delaware after researching top children’s hospitals near their home in Lehigh Valley, PA. His family was particularly drawn to Dr. Reid Nichols, who would become Jeffrey’s doctor for the next 11 years. Throughout his life, Jeffrey’s treatments have been multifaceted and challenging. Jeffrey underwent several procedures, including an iliotibial fasciotomy/tenotomy, femur shaft osteotomy, and the implantation of a Precice lengthening device, as well as hemiephysiodesis of the distal femur. These interventions were crucial in addressing his leg length discrepancy and associated complications. His mother Amber shares, “We are blessed that Dr. Nichols has been his doctor for 11 years and giving us the best treatment. Her upbeat outlook and confidence in her work gave us the motivation we needed to continue […]

Independence and Confidence: Braulin’s Story

Braulin’s family found out about their son’s diagnosis during Gissette’s pregnancy. Gissette noticed that her local doctor was sending her to do more sonograms and measurements than she had for her previous pregnancies, making Gissette nervous. It was during this time that her care team informed her that Braulin was diagnosed with dwarfism. After receiving the diagnosis, Gissette decided to explore new care options with experts that specialized in dwarfism. “In my country, the Dominican Republic, there wasn’t much information about how to treat or care for a child with dwarfism,” shares Gissette. “I had a lot of questions but no answers. This is when my journey of looking for answers on the internet started.” Through her research, Gissette was able to connect with other parents navigating dwarfism and Little People of America. Once Braulin was born, Gissette took several trips to the United States with Braulin to receive specialized […]

A Smooth Recovery: Karlee’s Story

12-year-old Karlee was riding her bike with her brother and cousin when a sudden mishap sent her tumbling to the ground, her left wrist bearing the brunt of the fall. The impact was immediate, and the pain was intense. “When I fell, I landed on my left wrist and felt a sharp pain in my arm,” Karlee recalls. After the accident, a trusted family member recommended they see Dr. John Lovejoy at Nemours Children’s Hospital, Florida. “All of my doctors and nurses at Nemours were really nice and made sure I was comfortable,” Karlee shares. From the moment she arrived, the team at Nemours took a compassionate approach, ensuring that Karlee felt at ease and understood every step of the process. “Dr. Lovejoy helped me understand what bones I broke and how they planned to fix them,” Karlee says. The detailed breakdown of her injuries and the treatment plan provided […]

Associate Highlight: Jenny Pfieffer, PCNS-BC, APRN, ESMHL

At Nemours Children’s Health, our nursing staff is integral to our mission of providing exceptional care to our patients and families. Jenny Pfieffer, a Clinical Nurse Specialist in our Pediatric Diabetes Center, embodies the dedication, compassion, and innovation that defines our nursing team. With over 20 years of experience, Jenny has made a lasting impact on the lives of countless children and families. Inspired by her mother’s belief that “the sky is the limit,” Jenny began her nursing journey in pediatric emergency care. Her work was driven by a deep love for helping others and making a difference. After relocating to Nemours Children’s Health, Jacksonville from Delaware, she transitioned into nursing administration and eventually found her calling to return to the bedside as a Clinical Nurse Specialist at the Diabetes Center. In this role, Jenny helped create a transition program that supports adolescents moving from pediatric to adult diabetes care. […]

Conoce a Amaia.

Read Amais’s Story in English En enero de 2024, la familia de Amaia llevó a su hija de dos años a la sala de emergencias de Nemours Children’s Hospital, Florida, en Orlando, después de notar que tenía crisis de mirada fija. Las crisis de mirada fija son un tipo de epilepsia focal corta, durante la cual el niño presenta una mirada vacía, confusión o pérdida de la conciencia de su entorno, a menudo sin ningún síntoma perceptible.  Su madre, Stefanie, recuerda el día exacto: “Amaia comenzó a sangrar por la nariz y a comportarse de una manera que no era normal, como girar y mirar hacia su lado izquierdo de una manera muy fuerte y sin moverse, e incluso se puso de color morado. Por eso decidimos llevarla a la sala de emergencias de Nemours”. Esa visita reveló un descubrimiento que les cambió la vida: un tumor cerebral. El impacto […]

Meet Amaia.

Lee la historia de a Amaia en español In January 2024, Amaia’s family brought their two-year-old daughter to the ER at Nemours Children’s Hospital in Florida after noticing staring seizures. Staring seizures are a type of short focal seizure, during which a child will stare blankly, confused or lose awareness of their surroundings, often without any noticeable symptoms.  Her mother Stefanie remembers the exact day: “Amaia started bleeding through her nose and was behaving in a way that was not her normal, such as turning/looking to her left side in a very strong way and not moving – even turning purple [blue]. Then we decided to take her to the ER at Nemours.” That visit revealed a life-changing discovery: a brain tumor. The impact was immediate. “The impact of this news on our lives was extremely strong. I had to stop working to care for Amaia, take her to the […]

Navigating Kidney Stones: Vincent’s Story

At 13 years old, Vincent found himself facing a painful and unexpected health challenge. What began as a nagging low back pain quickly escalated when he noticed blood in his urine. Alarmed, his family took him to urgent care, where the initial tests confirmed the presence of blood but also revealed a more serious issue: a kidney stone. The urgent care team, recognizing the severity, referred them to the Nemours Children’s Health, Lakeland and then to the hospital in Orlando for further evaluation. “I was nervous about the wait time, but their staff worked to fit us in quickly,” says Vincent’s mom, Jessica. “From the beginning, they were responsive and attentive.” The pain Vincent was experiencing disrupted every aspect of his daily life. “He couldn’t rest, enjoy his normal activities, or even feel comfortable sitting or lying down,” Jessica explains. “It was also very stressful for me as a parent […]

A Bright Future: Peter’s Story

Peter, a child with Down syndrome adopted from Hong Kong at the age of 3, has faced numerous health challenges throughout his life. His journey, including multiple surgeries and comprehensive care, is a testament to the importance of dedicated medical support. Peter’s health issues were first identified when his parents noticed he wasn’t thriving. After consulting several specialists, a podiatrist with training at Nemours Children’s referred them to Nemours Children’s Health. After several tests, Peter received a critical diagnosis: his C1-C2 vertebrae were not fused, posing a significant risk to his spinal cord. In September 2017, Peter underwent a lifesaving C1-C2 fusion surgery performed by Dr. William Mackenzie and Dr. Jeffrey Campbell at Nemours. Following the surgery, Peter showed remarkable improvements in various areas, including potty training, communication, and education. However, his journey was far from over as Peter was still experiencing complications with his foot. Further examinations with Dr. […]

Dancing Through Recovery: Sayuri’s Story

During an annual scoliosis screening at Sayuri’s middle school, one of the nurses noticed something unusual about her back. “I remember the nurse checking my back and pointing out that I twisted more to one side, and there was asymmetry with one side rising higher than the other,” Sayuri shares. “She told me that the case is most likely mild or moderate, as the condition was common and those of a higher severity were rare. I was sent home with a letter to my parents to get my back checked.” Sayuri’s initial X-rays confirmed the nurse’s suspicions. “When I got my x-rays done, I was told that I had moderate scoliosis, with a recommendation for a back brace to keep the curve from progressing,” says Sayuri. The diagnosis of adolescent idiopathic scoliosis, characterized by a severe S curve, meant that her life would require some adjustments. As Sayuri grew older, […]

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