We found hope at Nemours. This is where we learned how to fight. The doctors at Nemours explained the realities of this difficult diagnosis, but they did it in a way that was also filled with hope. They told us that Jude would write his own story. They taught us how to fight for him, care for him and advocate for him. We drive from Charlotte to Wilmington, Delaware for Jude to receive his medical care at Nemours with the incredible team there.
This post was written by Anthony’s mom, Debbie. “Something was Different” Anthony was about six months old when I started to notice something was different about his back. He would roll over and try to sit up and there was an obvious bulge/curvature in his spine. I took him to my pediatrician who told me there wasn’t anything to worry about. He informed me that some children take a bit longer to sit up on their own. At this time, I had two-year-old twins at home and was very aware that children progress differently, but there was no overlooking the curve of his spine. Unhappy with that visit, I scheduled an appointment with a specialist at a hospital in Philadelphia, PA. Finally a Diagnosis Anthony was about a year old when he was diagnosed with infantile scoliosis. My family was with me in the room when the doctor put his […]
As originally posted on “Love What Matters,” written and submitted by mom, Marcella Stanley “‘I’m sorry, but I don’t think he’s going to make it.’ My husband and I sat flabbergasted, the tears instantly streaming while I struggled to breathe. A room filled with nearly a dozen people stared awkwardly at us as we faced every parent’s worst nightmare. This was not how this day was supposed to go. We found out exactly four weeks prior, at our 20-week ultrasound, that our baby boy had a form of dwarfism. The initial concern was that it was a lethal condition, due to the severity of his skeletal abnormalities and how early they presented in the pregnancy. However, my amazing local OB and maternal fetal medicine physicians researched, and after painstakingly detailed ultrasounds, determined our son likely had a non-lethal skeletal dysplasia. His limbs were awfully short, but his chest was average […]
“Give a man a fish, and you feed him for a day. Teach a man to fish, and you feed him for a lifetime.” – Proverb About a year ago, Dr. Cynthia Reyes joined Nemours Children’s Hospital as the Division Chief of Pediatric Surgery and Surgical Director of Quality. Since joining the team, she’s been helping to expand the pediatric surgery program and develop a surgery quality program. Dr. Reyes holds the honor of being the first Hispanic female trained in pediatric surgery in the U.S. Along with Dr. Reyes years of experience and success in pediatric surgery, she also brings a unique perspective to the Nemours community. For more than 20 years, she has been an active member of the Pacific Association of Pediatric Surgeons (PAPS), which supports the growth of pediatric surgery around the world, with a focus on the countries of the Pacific Rim. Formed 50 years […]
This post originally appeared on Philly.com By now you’ve probably heard about the Hot Pepper Challenge for ALS which began gaining popularity this month. After NBA writer Tom Haberstroh found out his mother was diagnosed with ALS, his family started the Hot Pepper Challenge in December to raise money for research — a similar idea to the Ice Bucket Challenge in 2014. People are nominated on video and encouraged to donate to the cause. Should Your Kids Take Part? Challenges like this are done in good fun and help to raise awareness and funds for important causes. But as a pediatrician, I have mixed feelings about children participating in the pepper challenge. Here’s why. Hot peppers can cause some unpleasant symptoms due to a chemical compound called capsaicin. Most of the capsaicin is in the seeds and membranes, so remove these parts if you’re worried about the heat. Among other things, capsaicin […]
I celebrated my first National Diabetes Awareness Month in 1990. I was twelve years old, had just started seventh grade, and was very aware of Type 1 diabetes – I’d just been diagnosed with it. Aside from the distinctive smells of insulin and alcohol swabs, I don’t remember much about the time I spent in the hospital after my diagnosis, or about those first few months at home. I do, however, remember the sense of bewilderment that accompanied my family home from the hospital, and how uncertain we were about how our lives would proceed with a chronic condition to manage. If I could go back to that November, there’s so much I would tell my younger self about the reality of living with diabetes. Unfortunately, I can’t – so I’m sharing what I’ve learned here. Don’t panic. It’s true that diabetes can (and will) infiltrate every part of your […]
Have you ever watched one of the CSI TV shows or Criminal Minds and wondered what it would be like to investigate a federal crime? This summer some of our patients were given that very opportunity. The 2nd annual Homeland Security Cadet Camp took place at Nemours/Alfred I. duPont Hospital for Children earlier this summer. For one week, patients from our hospital, along with their siblings (eleven kids total), had the opportunity to experience the entire process of investigating a crime—from gathering evidence and following leads to tracking down and capturing the “bad guy!” This program is entirely free for kids and is a huge community effort that includes Chester County SWAT, Pennsylvania State Police, Homeland Security, Immigration and Customs Enforcement (ICE), and many more, including Child Life here at the hospital. The week included classroom instruction, field trips, and the final day at a training facility in Chester County, PA. […]
When one-year-old Piper’s body began to swell one afternoon, her parents thought she was having an allergic reaction. They had no idea that they were about to embark on a journey of rare illness, complex treatments, and advocacy for children’s health. Piper’s parents, Erin and Chris Lee, took their daughter to her pediatrician, expecting a quick diagnosis and an easy solution. But Piper wasn’t allergic to anything. Instead, they learned her kidneys were failing; Piper would have to be admitted to Nemours/Alfred I. duPont Hospital for Children immediately. There, pediatric nephrologists proposed genetic testing for Piper. That’s because, although it was clear that Piper’s kidney function was declining, the cause of her decline wasn’t so obvious. In order to proceed with the best treatment for Piper, her doctors needed to know just what kind of kidney disease they were dealing with. They needed the help of precision medicine, a newer […]
For many years, Dr. Stephen Dunn, Chair, Department of Surgery and Chief, Division of Solid Organ Transplant at Nemours/Alfred I. duPont Hospital for Children, has volunteered his time and expertise to assist colleagues in Bolivia with life-saving liver transplantation for their pediatric patients. In early May, Dr. Dunn and fellow Nemours team members traveled to Bolivia as volunteers to continue this important work. On this particular trip, interventional radiologist Dr. Deborah Rabinowitz performed a radiologic procedure for a child who had complications after a liver transplant at Clinica Incor in Santa Cruz, Bolivia. It was the first time a pediatric invasive radiology procedure of this type had ever been performed in Bolivia. Dr. Rabinowitz joined the team of physicians for this project specifically to assist this child. In this case, an obstructed bile duct had caused a serious infection that threatened the child’s life. In the past, treatment in Bolivia would have required […]
Better health outcomes for all of us, at a lower cost and with fewer side effects. It’s no secret that each of us is different – we’re born with different genetic backgrounds, grow up in different environments, and lead different lifestyles. But until now, much of the medical care we receive has been delivered in a one-size-fits-all way. Precision medicine, a newer approach for disease treatment and prevention, takes into account all the things that make us different – and uses those factors to create more effective treatments with fewer side effects. In the same way that a doctor might take your child’s medical history (think allergies, blood type, past surgeries or illnesses) into consideration before recommending a course of treatment, precision medicine can guide health care professionals in the same way. But precision medicine is more than a fancy technique. Instead, it’s a movement for understanding, diagnosing, managing and […]
Dr. Tamar Goldberg, a second-year pediatric resident at Nemours/Alfred I. duPont Hospital for Children, reflects on volunteering with Hands Up for Haiti. In July 2017, Dr. Goldberg will start her subspecialty training in pediatric neurology and neurodevelopmental disorders at Boston Children’s Hospital. Children in orange and plaid school uniforms with hair neatly parted in matching bows shout “blanc, blanc,” and wave at our rickety van as we pass. Palm trees grow at the roadside along with banana trees and rows of cactus bushes displaying that afternoon’s clean laundry. Locals push wheelbarrows full of coconuts or steer their donkeys carrying lumber. Goats and chickens mill around in vast green fields leading up to lush mountains. In February 2017, I had the opportunity to travel to Haiti with a team of pediatric residents from Nemours/Alfred I. duPont Hospital for Children to provide medical care for children in partnership with the organization Hands Up […]
This year marked the fourth time that patients and families gathered to share stories, common concerns, and inspiration at our annual Patient and Parent Mentoring Event, hosted by the Nemours Spine and Scoliosis Center. More than 100 people gathered at Nemours/Alfred I. duPont Hospital for Children on a gorgeous spring day. As in years past, this event was open to families with adolescents who have idiopathic scoliosis, which is the most common form of the disease. More than 3% of the population has scoliosis, a condition that causes the spine to curve from side to side. For some, no treatment is necessary, just periodic monitoring of the curve by a healthcare provider. For others, treatment is required, which can include bracing to halt or slow down the progression of the curve, or surgery to correct the deformity. At the mentoring event this year, Dr. Suken Shah started things off by […]
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