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Surgery

Evander’s Cleft Lip Journey

When Raelyn and James went for their 20-week ultrasound in December 2022, they were expecting to hear that everything was progressing perfectly with their baby boy. For the most part, things were. However, during the scan, the doctor and nurse discovered something unexpected—a cleft lip. They explained that their son, Evander, would be born with a unilateral cleft lip, and there was a chance he could also have a cleft palate. For Raelyn, this news was overwhelming. As a new mom unfamiliar with clefts, she found herself navigating a whole new world. “I knew nothing about clefts before this,” she shares. “I spent a lot of time researching and preparing for any outcome.” Raelyn devoted herself to learning as much as she could, connecting with other families and educating herself about what lay ahead. Nemours Children’s Hospital, Delaware, was the first recommendation Raelyn and James received from their local doctor. […]

Marcella’s Story: In Mom’s Words

Marcella was born prematurely at another hospital in May of 2023. She had a fairly uneventful first month, until she developed Necrotizing Enterocolitis at 4 weeks. She had her feeds stopped, was put on the ventilator because her stomach was so swollen it was affecting her breathing, and IV antibiotics were started. But the disease had already progressed too far, and she continued to go downhill fast. Two days after the diagnosis she was transferred to the Nemours Children’s Hospital, Delaware NICU, and the following afternoon she had her first exploratory laparotomy. Things were looking very bleak after this first surgery. Her intestines were put into a silo, basically a clear bag that held them outside of her body so doctors could visualize what the tissue looked like. Based on what they saw, it was very likely that she would not survive as all the tissue appeared to be dead. That […]

A New Beginning: Aubri’s Story

Aubri’s journey at Nemours Children’s Hospital, Florida, is a testament to her resilience and the impact of specialized care. Aubri struggled for over a year with severe gastrointestinal issues, unable to keep food down. Her condition was so dire that she relied on feeding tubes to survive. “Aubri had an emergency tube placed in her nose and later in her stomach directly,” shares her mother, Alanda. “That was her only source of food for so long! It was awful! She was in so much pain and nauseous all the time, everything was hard.” The situation was grim, and their local hospitals seemed unable to provide the answers or care that Aubri desperately needed. The turning point came when Alanda learned about Nemours Children’s Hospital, Florida and Dr. Poulos. “It was an absolute Godsend,” she says. A friend, who had glowing experiences with Nemours Children’s, inspired Alanda to seek out the […]

Urology Awareness Month: Kieva’s Story

10-year-old Kieva has faced many challenges in her young life. At the age of 3, she was diagnosed with bilateral vesicoureteral reflux (VUR), a condition that brought frequent UTIs and fevers. Kieva’s journey with VUR began after a series of high fevers and recurring UTIs left her parents, Tara and Tim, searching for answers. “The constant worry about whether a fever was another UTI and the potential damage being done to Kieva was overwhelming,” shares Tara, Kieva’s mom. “Each instance left us questioning if we had sought medical help in time and how this condition might impact her future.” Kieva’s condition led them to Nemours Children’s Hospital, Delaware, where they found the care and support they needed. Referred by Kieva’s primary care doctors at Nemours Children’s Health, Media, the family met with Dr. Figueroa, who quickly became a pillar of Kieva’s care. From the very first visit, Tara knew they […]

Savannah’s Cochlear Implant Journey

Born in November 2013, Savannah passed her initial hearing screening at birth, leaving her parents unaware of any hearing issues. It wasn’t until a playful moment during a game of telephone at age 6 that they discovered Savannah’s hearing impairment. Her father, Gabe, recalls the moment: “I whispered something into her left ear, and she said, ‘Oh no, Daddy, you have to whisper in my other ear. That ear doesn’t work.’” This revelation was the start of Savannah’s hearing journey. This casual game confirmed their initial suspicions. Gabe shares, “When she told us she couldn’t hear out of that ear, it made sense. She was always a loud talker, and her speech curled towards the ear that worked.” The family sought help from hearing specialists, but the initial results were disheartening. “We tried a hearing aid, but it only boosted her hearing from 4% to 12%. It just wasn’t enough,” […]

Coordinated Care: Micah’s Story

Micah’s journey began with some unexpected twists and turns, before he even entered this world. “Before Micah was born, we received the news that he might have Down syndrome through routine blood work during pregnancy,” shares his mother, Kaitlyn. “It was a whirlwind of emotions, but we leaned on the support and expertise of Nemours from the very beginning.” Kaitlyn’s family have been seeing providers at Nemours Children’s throughout the Delaware Valley ever since her firstborn arrived prematurely. Her GYN office recommended Nemours Children’s, and they found the care to be exceptional, so they continued with Micah’s treatment there. It was his team at Nemours that diagnosed Micah with Trisomy 21, commonly known as Down syndrome, along with clubfoot and a cardiac concern – coarctation of the aorta. Nemours became their beacon of hope, with a multidisciplinary team ready to address Micah’s complex needs. From the Trisomy 21 Clinic to […]

A Fulfilling Adventure: Julieta’s Story

When Julieta was just 1 month old, she was diagnosed with Spinal Muscular Atrophy type 1 (SMA Type 1). SMA is a rare genetic condition that causes muscle weakness and atrophy, significantly impacting Julieta’s ability to walk, sit up, and control her head movements. It also affected her ability to speak and eat. Julieta’s mother, Melissa, recalls the initial shock and heartbreak that accompanied the diagnosis: “After I got the call with her results, I was told by five neurologists that she was not going to make it past 1 year of age. Obviously, this put me in a sad and grieving mental state. We as a family were devastated.” Shortly after receiving her diagnosis, Julieta was referred to Nemours Children’s Hospital, Florida by a neurologist in Miami. “After I visited Nemours and felt finally safe and with big hopes for my daughter, I went back to Dr. Miller in […]

18 Years Cancer-Free: Andrew’s Story

When Andrew, now 28, reflects on his journey with Nemours Children’s Health, he describes it as nothing short of miraculous. Diagnosed with hepatoblastoma that had metastasized to his lungs and brain as a child, Andrew’s journey to recovery has been thanks to his expert medical care and unwavering support system. In November 1999, 3-year-old Andrew woke up in the middle of the night complaining of shoulder and abdomen pain. His parents, concerned, took him to the pediatrician in Augusta, Georgia, where appendicitis was initially suspected, and surgery scheduled. However, a perceptive surgeon, recalling a rare medical condition from his studies, insisted on further tests. The results were alarming: Andrew’s cancer markers were sky-high, pointing to a serious diagnosis. The local medical team quickly realized they needed specialized help, so he was transferred to a children’s hospital. The surgeons there reached out to Dr. Adela Casas-Melley, who was working at Nemours […]

A Journey With Craniosynostosis: Georgia’s Story

At 11 months old, Georgia has already shown incredible resilience and strength throughout her life. Diagnosed with isolated nonsyndromic unilateral craniosynostosis at 8 weeks of age, Georgia’s journey has been a whirlwind of medical appointments, treatments, and hopeful recovery. Karin and Edwin knew early on that something was different about their daughter, Georgia’s, head shape. They voiced their concerns during her 1-month and 2-month check-ups. At her 2-month appointment, the nurse practitioner conducted a thorough examination. It was then that they noticed an absence of the soft spot on the top of Georgia’s head. This was a critical moment for her family. Craniosynostosis is a condition where one or more seams between the bones in a child’s skull close too soon. This premature closure prevents the skull from growing properly and results in an abnormal head shape. If left untreated, craniosynostosis can increase intracranial pressure, leading to developmental problems, headaches, […]

From Michigan to Florida: Kevin’s Story

Kevin’s healthcare journey began at just three months old when he was diagnosed with Neuronal Migration, Microcephaly, and Differentiation Muscular Hypertonicity. This diagnosis marked the beginning of a new chapter for Kevin and his family, as they worked through the complexities of his condition. Prior to finding care at Nemours, Kevin’s diagnosis affected every aspect of daily life. His mother describes a relentless cycle of hospital visits and treatments. “He missed lots of school, and family trips,” says Kevin’s mom. “We would wake up 7-10 times a night, he would never sleep because of pain and so much more.” However, hope and new experiences emerged when Kevin’s family discovered Nemours in November of 2023. After months of research, they made the life-changing decision to seek care at Nemours, leaving behind their home in Michigan in pursuit of care for Kevin. From the moment they stepped through the doors of Nemours, […]

Axel’s Pectus Excavatum

From a young age, Axel’s family had noticed the unusual appearance of his chest. They took him to see a few different providers, but they were told that his chest was not responsible for his symptoms, and it was only a cosmetic defect. It wasn’t until Axel needed a checkup and couldn’t get into his regular pediatrician that his mom searched for another pediatrician. At that appointment, Axel asked his mom once again to mention his chest, and although hesitant due to their past experiences, she brought it up. This pediatrician immediately noticed that something was wrong and referred them to Dr. Kellianne Kleeman, a pediatric cardiothoracic surgeon at Nemours Children’s Hospital, Florida. Dr. Kleeman mapped out a detailed care plan that included a minimally invasive surgery to repair his pectus excavatum. Axel says, “When Dr. Kleeman showed us the picture in clinic—that was the first time I saw my […]

From Patient to Pre-Med: Maddie’s Story

At 13 years old, Maddie Walsh was diagnosed with melanoma. This unexpected turn led her to Nemours Children’s Hospital, Florida, where she found a supportive community that became like family. Maddie’s journey began with the discovery of a change in a mole she had since childhood. A dermatologist family member recognized the signs and urged her to seek medical attention. Following a biopsy and consultations with various pathologists, Maddie received the diagnosis of malignant melanoma from Chief of the Division of Plastic and Craniofacial Surgery, Dr. Brian Kellogg. “I was 13 when I first heard I was going to see a plastic surgeon. I was very confused because I only knew them by the stereotypes on TV,” says Maddie. “However, I quickly learned that was far from what Dr. Kellogg and his team does. When I first heard the word ‘cancer,’ my mind jumped to the worst. I was terrified. […]

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