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The Star Wars Cardiac Jedi- Vincent’s Story

Contributed by Vincent’s mom Tamara. When my father died of a heart attack at the age of 39, I was only 4 years old. It was very hard on me and I always feared that I would have a heart problem or my kids would have one. Our pediatrician recommended that both my son and daughter be seen by a cardiologist to be sure that their hearts were healthy. She asked that I get my children cleared by the cardiologist, so of course; I called Nemours Children’s Health, since we’ve had previous appointments there. My daughter and son both had an EKG;  Dr. Steven Ritz, our Nemours pediatric cardiologist, said that something showed up on Vincent’s EKG and that he would need to have an ultrasound. Dr. Ritz went over his findings in detail with us. Vincent was diagnosed with Wolff-Parkinson-White (WPW) Syndrome, a condition in which he has an extra electrical […]

Patient surrounded by her care team

The Beat Goes On: Grace, a Heart Patient, Shares Her Story

Back in February of 2016, I started experiencing horrible palpitations, and decided one day to go get it to check out. I was immediately diagnosed with (WPW) -Wolff-Parkinson-White syndrome. After my first heart ablation, everything went smoothly. I was back to doing all the sports I loved like track and cheer! I was living life to the fullest. However, a couple of months later, I started to have the same palpitations, along with being super tired and getting dizzy. The doctor I originally went to had moved away, so my mom who is a nurse, did her research, and we decided to switch over to Nemours Children’s Health.  Seeing a cardiologist there, I had my second heart ablation in December 2016. I was 14 years old and have had two heart ablations! The surgery was quick, and I was told that everything looked good, they said. I recovered perfectly and […]

Dancing Perfection- Samantha’s Spine Story

During a routine scoliosis check in school, Samantha received some alarming news. She was diagnosed with scoliosis and her spine had grown into an S shape. After meeting with multiple doctors and specialists, Samantha’s family decided to come to Nemours Children’s Hospital, Delaware to meet with Dr. Suken Shah, pediatric orthopedic surgeon. Due to the severity of the curve, Dr. Shah determined that a posterior spinal fusion was needed to correct her spine and prevent pain and disability in later life. Samantha was nervous but determined. She continued dancing, her passion, up until the day of her surgery. Her determination continued as she was able to stand within hours of her surgery, and walked the hospital halls the next day thanks to excellent pain management and the Nemours rapid recovery pathway.  She was also thrilled to learn she had grown a couple of Inches! Not sure she would ever dance again, Samantha […]

An International Search of Hope- Maria’s Story

Contributed by Maria’s dad Shahid. When Maria was 10 months old, we noticed some abnormalities in her chest and back, but we weren’t able to find a hospital or doctor who understood her situation.  She was frequently ill with pneumonia and breathing was painful. Her condition eventually worsened.   When she was 18 months old, we met a doctor in Peshawar, Pakistan who diagnosed Maria with MPS. It was our first time hearing the word MPS (Mucopolysaccharidosis), so we did online research and reached out to other families. Unfortunately, there is no treatment for rare diseases in Pakistan and there was no family to guide us for diagnosis and treatment. I sent Maria’s bio-samples to India, and Germany where they confirmed that she had MPS, but they were unable to determine her type of MPS. So, I sent her samples to the US and a diagnosis with MPS IV was […]

Achieving Milestones with a Disability- Emily’s Cerebral Palsy Journey

Contributed by Emily’s mom Elizabeth. Emily is an AMAZING little girl! At 5-years-old, she is comfortable telling people she has a disability and that her muscles work differently than theirs do. Emily was born three months early and diagnosed with cerebral palsy when she was about a year and a half old. Both Emily and her identical twin sister, Sarah, were delayed in reaching their milestones, but Emily’s delays were more pronounced.  Emily is super determined and does everything she can to keep up with her peers. This requires A LOT of hard work! Emily does about 6-7 hours of therapy a week, a combination of PT, OT, and aqua therapy. Since she was about 3, Emily has received intermittent Botox injections to loosen her muscles and give her some additional flexibility and mobility. For example, she learned to walk with lofstrand crutches within 6 months, a task they rarely teach children her age given […]

Let's Rethink How We Talk to Teens about Their Weight

Let’s Rethink How We Talk to Teens about Their Weight

Perhaps we need to rethink how we talk to our teenagers who have a weight issue. At the Nemours Eating Disorders Evaluation and Management Program, we see teenagers who pinpoint the onset of their eating disorder to comments made by well-intentioned doctors, coaches, or health teachers.

Depression Screening in Primary Care, Powered by Nemours Children's Health System

Depression Screening in Primary Care – Why It’s Essential

Rates of mental health concerns among adolescents, including depression and suicidal thoughts, have risen substantially in recent years. Studies have also shown that the COVID-19 pandemic in the U.S. has disproportionately affected people with low socioeconomic status, as well as Black, Indigenous, and Latino people, all of whom have experienced higher rates of cases, hospitalizations, and deaths. According to suicide.org, about 20 percent of all teens experience depression before they reach adulthood, but only about 30 percent of teens are being treated for their symptoms. Pediatric primary care is an important setting for routine mental health screening among adolescents. The American Academy of Pediatrics (AAP) recommends universal screening by primary care providers for all patients 12 years of age and older at their annual well visits. Depression screenings are important because signs can often be missed if they are not obvious to untrained individuals.  Kids who are in distress often […]

Nathan's Story

Nathan’s Story of Determination

This post was written by Nathan’s mom Kim Silpath “It’s not about me anymore, it’s about the other kids”- Nathan Every day, 43 parents have to hear the same words we heard a few years ago, “your child has cancer.” I still remember that moment, and the reaction from my son, Nathan. He was ready to fight it. Not just for himself, but fight and help other children with cancer too. I could not have been more proud. Nathan was an incredible child that had a passion for school, sports, and most importantly helping others.  He loved meteorology, biology, hiking, soccer, sled hockey, and football! Nathan’s cancer battle started in 2010 when he was at soccer practice and started mentioning how his leg was bothering him. Nathan noticed a bump on his leg, but like most kids, didn’t think much of it and continued playing soccer. As his pain increased, […]

When Your Child Complains of Chest Pain by Thomas Craig Edwards, MD | Promise, powered by Nemours Children's Health

When Your Child Has Chest Pain

When your child complains of chest pain, it’s natural to jump to heart-related conclusions. But most cases of chest pain in children aren’t caused by cardiac conditions. It can sometimes be hard to get a clear description of your child’s chest pain, but symptoms usually include: Tightness. Discomfort. Burning sensation. Pain when taking deep breaths. Coughing. Wheezing. So what should you do? Make an appointment with your child’s primary care physician, and keep in mind that chest pain in children is usually not heart-related. Chest pain can often be attributed to one or more of the following: Gastroesophogeal reflux disease, or ongoing heartburn Pain or inflammation in the chest wall Asthma Pneumonia Stress or anxiety Injury Viral illness Heading to the hospital is absolutely necessary in some situations. Seek emergency care if: Exercise brings about chest pain, or makes it worse. Chest pain occurs with rapid or irregular heartbeat. Fainting or […]

Celebrating Each Moment with Cancer in the Rearview

This blog post is written by Larry, the father of Maddie, a medulloblastoma patient who survived a brain tumor at the age of 2. Larry inspires us by sharing his daughter’s story. “Heroism is endurance for one moment more.”      George F. Kennan In the fall of 2008, at the age of two, our daughter Maddie was diagnosed with medulloblastoma, a brain tumor that arises at the base of the brain and often spreads down through the spine via the spinal fluid. Over the course of the next ten months, Maddie underwent multiple brain and spine surgeries and intense chemotherapy protocols at Nemours/Alfred I. duPont Hospital for Children. After six cycles of chemo treatment, she had made amazing progress, knocking out 90% of her original disease. Because her scans were not completely cancer-free, she then went through an additional six weeks of radiation therapy. Conquering Cancer The effects of radiation on a 3-year-old can […]

Expert Question and Answer

Expert Q&A: Osteogenesis Imperfecta (OI)

Questions about osteogenesis imperfecta (OI), or “brittle bone disease,” are answered by pediatric orthopedics experts at Nemours Children’s Health. Q: When should people with OI get rods in the bones in the legs? A: We view realigning and rodding the bones in the legs, femurs and the tibias as a way to address deformity or bowing that is interfering with each patient’s motor development or causing recurrent fractures. We feel there is no minimum age, this is something that we really do value, continually assessing on an individualized basis to help each patient reach their potential. Q: How would you describe the use of orthotics in patients with OI? A: The word orthotics generally refers to all types of braces or things we put on patients’ arms or legs to help them function better. We use them on a case-by-case basis. Years ago we used to use heavy long leg […]

The bridge to a brighter future

The bridge to a brighter future

When Erin Pitts faced spinal surgery as a teen, she never imagined it would impact her life in other ways. Diagnosed with scoliosis at a young age, initially the care plan for the Jacksonville, Fla., resident was to pursue a non-surgical approach to correct the curves in her spine using a back brace. When her complex scoliosis proved resistant to treatment, however, surgery became the best option for long-term results. The experience ended up changing not only her health, but also her career trajectory. Pitts first learned of her condition in the sixth grade, when she began experiencing intense lower back pain. As her condition gradually began limiting her daily activities, her mom made an appointment with her pediatrician. He referred her to Nemours for an orthopedic assessment, where she became a patient of Eric Loveless, MD, department chair of orthopedics at Nemours and a board-certified pediatric surgeon who performs […]

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