Guest Contributor, Author at Nemours Blog - Page 5 of 28

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Mending the Smallest Hearts: Lottie’s Tetralogy of Fallot Diagnosis (In Mom’s Words)

Our precious newborn, Lottie was the cutest bundle of joy we could have ever imagined. At just weeks old, our pediatrician noticed a heart murmur at her routine visit. We had no idea until a visit to the Nemours Children’s Cardiac Center in Delaware that she had any cardiac issues whatsoever. After an echocardiogram, Lottie was diagnosed with Tetralogy of Fallot (TOF). Her diagnosis included TOF with valvar and subvalvar pulmonary stenosis, with large secundum ASD and additional posterior muscular VSD.  After we received Lottie’s diagnosis, we were very anxious, knowing our child could have “TET spells” a condition where she would have had lack of oxygen and blood to her organs, including her brain. Constant monitoring and always watching for any signs, knowing that her condition was inevitably going to worsen. As a nurse, I knew immediately she would need open heart surgery and I felt like my whole world came […]

On The Right Path: Marina’s Story

When Marina was just 6 months old, her family noticed something unusual—her neck often fell to one side. This seemingly minor issue led to a series of medical consultations and diagnoses that would shape the future for Marina and her family. Diagnosed with torticollis and abnormally low muscle tone (hypotonia) by her pediatrician, Marina was referred to a neurologist at Nemours Children’s Hospital, Florida for further evaluation. Upon consulting with Nemours Children’s specialists, it was discovered that she was experiencing frequent seizures. “Various specialists conducted studies, leading to the discovery of congenital cytomegalovirus on February 2, 2022, just after her first birthday,” shares her mother, Kenialys. “This news left us shocked, confused, sad, anxious, and scared. However, the dedicated care from healthcare professionals at Nemours helped us regain optimism and hope for Marina’s future.” Cytomegalovirus (CMV) is closely related to the viruses responsible for chickenpox and mononucleosis (mono). Babies infected […]

Navigating Crohn’s Disease: Billy’s Story

Jessica, 12-year-old Billy’s mother, recalls the summer of 2022 when they noticed something unusual during their family getaway. “While on vacation, we discovered he had an anal fistula,” she recounts. In April of the following year, Billy experienced his first flare-up, ultimately leading to a diagnosis of Crohn’s disease. Located in their hometown, Nemours Children’s Hospital, Florida became a regular visit for Jessica and Billy. “We have lived in Lake Nona for over 11 years,” says Jessica, so they were already familiar with the Nemours Children’s location. From the moment they stepped through the doors, they were greeted by a team of dedicated professionals led by gastroenterologist Dr. Pablo Palomo. Reflecting on their experiences with the Nemours team, Jessica highlights the genuine care and compassion in each interaction. “Billy’s liked everyone he’s ever interacted with,” says Jessica. “My favorite thing about them is how special they make me feel, even […]

From Diagnosis to Triumph: Ny’Jour’s Journey

From diagnosis to triumph, Ny’Jour’s complex medical journey involving heterotaxy and heart complexities received compassionate care from Nemours Cardiac and Maternal-Fetal Medicine teams.

AMC Awareness Day: Sara & Ewa

On this Arthrogryposis Multiplex Congenita (AMC) Awareness Day, we shine a spotlight on two remarkable women, Ewa and Sara, whose journeys with AMC have inspired countless individuals. Ewa’s journey with Nemours Children’s Health began in 1986 when she traveled from Poland to receive treatment for AMC, a rare condition affecting 1 in 3,000 births. Nemours became her second home, offering life-saving care and support from a dedicated team of doctors and therapists. “Nemours, along with my family, truly shaped me into the person I am today,” Ewa shares. Her gratitude for the care she received has fueled her commitment to give back through various fundraising initiatives, including Nemours Radiothon, Brace for the Race, and an annual toy drive. In her latest endeavor, Ewa organized a book fundraiser for another Arthrogryposis patient and author, Sara Gaver. For every book donated, Ewa matched the donation, resulting in a collection of 110 copies […]

Scoliosis Awareness Month: Esther’s Story

Esther’s journey with scoliosis began during a routine check-up in the summer of 2020. Her primary care physician discovered the curvature of her spine during a yearly visit, just as Esther was experiencing a growth spurt. Her provider quickly referred Esther to a specialist at Nemours Children’s Health, Jacksonville, where an X-ray confirmed the diagnosis. “I went to get X-rays and found out my spine was crooked,” Esther shares. “It was unexpected, but I’m grateful we caught it when we did.” Under the care of orthopedic surgeon Dr. Kevin Neal, Esther embarked on an 18 month journey, closely monitoring the progression of her curve, and exploring treatment options. In the beginning, Esther didn’t experience much pain. However, as the curvature of her spine progressed, approaching 60 degrees, the impact on her daily life became increasingly challenging. “Pain didn’t come until the curve progressed horribly over two years or so, and […]

Associate Highlight- Jonathan Haro’s Stem Cell Donation

Jonathan decided to become a nurse after his grandfather was diagnosed with bladder cancer. He was inspired by the many great nurses that cared for his grandfather at home and inpatient. Around the time he was graduating high school he was thinking about careers to pursue. Jonathan says, “I knew I liked working with people, and most of all I liked helping. Nursing fit into those categories perfectly and that’s what led me to apply to nursing school.” But Jonathan’s story here at Nemours Children’s Health is unique. Here’s his incredibly unique journey in his own words: In April of 2023, I was running in the Mimosas for Marrow 5K that is hosted by a previous oncology patient and her family. At this 5K I connected with the National Marrow Donor Program (NMDP), who added me to the national donor database. In November, I then found out that I had […]

Training the Next Generation of Pediatric Mental Health Providers:

Fellows Share Their Challenges and Triumphs  For Mycah Ayala-Brittain, volunteering in her mother’s special education classroom was her first opportunity to learn how professionals collaborate to meet the needs of children. The classroom had teachers, teaching assistants, physical therapists, occupational therapists, speech and language pathologists, and medical personnel that collaborated to provide individualized care to support children with behavioral health needs.   Throughout her education, Mycah learned about the barriers that families face accessing quality health care. These experiences led her to pursue a doctorate in psychology, expanding her knowledge and allowing her to provide culturally sensitive mental health care. At Nemours Children’s Health, Mycah has had the chance to explore multiple behavioral health settings, further growing and strengthening her skills within an integrated health care system.   When Martisha Brown was growing up in Delaware, she felt like she didn’t have the counseling support she needed. High school brought about challenges, […]

Scoliosis Awareness Month: Kalani’s Story

Under the expert care of our dedicated team in Nemours Children’s Hospital, Florida, Kalani embarked on a path of treatment for juvenile idiopathic scoliosis and neurofibromatosis type 1 (NF1) at 6 years old. Her journey began in July 2023 when her mother, Monica, noticed a slight curvature in Kalani’s back. Concerned, they sought answers from orthopedic surgeon Dr. John Lovejoy at Nemours Children’s. “An X-ray confirmed that her back had a curvature and an MRI was ordered out of caution to make sure there was not an underlying issue causing the curve,” shares Monica. “The MRI showed she had lesions/tumors believed to be caused by NF1. Following the MRI results, Dr. Lovejoy referred Kalani to oncology and genetics to confirm the diagnosis and begin treatment. When we had a follow-up with Dr. Lovejoy at the end of October 2023, an X-ray showed the curve in Kalani’s spine had gotten worse […]

Work Hard, Rest Hard, Play Hard: Sparsh’s Story

At just 21 years old, Sparsh has already achieved what many only dream of, inspiring and touching the hearts of millions across the globe. Born with Osteogenesis Imperfecta, a condition making his bones extremely fragile, Sparsh faces unique obstacles in his daily life. Unable to bear weight on his hands and legs, he navigates the world differently than other kids. It was Sparsh’s diagnosis of severe scoliosis at the age of 14 that led him to Nemours Children’s Health. During a routine checkup and X-Rays with his local orthopedic doctor, Dr. Thomas McPartland, the scoliosis was discovered. Conversations about spinal fusion surgery immediately began. “My scoliosis required me to rest often in my wheelchair or on my bed to relieve back pressure,” says Sparsh. “It severely affected my posture, which indirectly hampered the function of vital organs such as my lungs, which are important to my singing career!” Sparsh is […]

Associate Highlight: Suken A. Shah, MD

At Nemours Children’s Hospital, Delaware, Dr. Suken A. Shah, The Shands/MacEwen Endowed Chair of Orthopedics and Chair of the Department of Orthopedic Surgery, leads with expertise and unwavering dedication to improve the lives of patients. His professional journey is rooted in a commitment to medicine and determination to solve complex cases. Reflecting on his early career decisions, Dr. Shah notes, “I was drawn to surgery early on, particularly during my medical school years.” Exposure to orthopedic surgery and guidance from esteemed mentors set him on the path to becoming a pediatric orthopedic surgeon. Dr. Shah’s decision to specialize in orthopedics stemmed from a desire to restore function and mobility, particularly in pediatric patients, setting the stage for his impactful career. Critical thinking and collaboration are essential components of patient care for Dr. Shah. “The most rewarding aspects of our work are when we can help a child with a complex […]

Family Advocacy: How Cancer took Cameron to Chords and Capitol Hill

For Cameron Thackston, 17, what started as a pain in his foot in early 2023, turned out to be something much more serious. He and his mom, Alma, thought it could’ve been tendonitis, only his condition wasn’t improving. The sharp pains continued to the point where the family was forced to take a trip to the emergency room. After a few rounds of testing Cameron received the news. He was diagnosed with cancer. Mom was devastated. “I went into a panic,” she said. And Cameron?  How did he take the news? He had one simple question for the care team. “Is it curable?” he asked. “Yes,” they said. “Cool,” he replied. With his primary diagnosis being T-Cell Acute Lymphoblastic Leukemia, his mom admits she was scared. But the family only had one choice. Fight. After rounds of infusions and oral chemotherapy and hours spent on the Hematology-Oncology Floor at Nemours […]

Page 5 of 28

Page 5 of 28

Page 5 of 28