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COMMUNITY CONNECTION

Speak Now for Kids- Family Advocacy Day

Nemours Children’s Health is proud to participate in the 2022 Children’s Hospital Association’s (CHA) Speak Now for Kids’ Family Advocacy Day. This annual event brings together pediatric patients, their families and the children’s hospitals that care for them to speak with our Congressional leaders about the unique needs of children and how children’s hospitals play a critical role in providing coordinated, specialized care for our youngest generation. This year, we are excited to bring two young champions and their families to meet virtually with our Delaware and Florida Congressional delegation members to share their inspiring stories.   David Smith*, 12 years old, Wilmington DE David started exhibiting challenging behavior at age 5. These behavioral issues became more intense over time. While he was excelling academically, he experienced strong emotional outbursts at school, which led to many trips to the principal’s office. In the beginning, school administrators believed he would outgrow […]

PATIENT STORIES

A Fighting Spirit- Emilee’s Story of Heart and Spine

If resilience had a name, it would be that of 12-year-old Emilee. She was born with a complex heart defect called single ventricle that required heart surgery when she was just 2 days old. Her fighting spirit endured through three more heart surgeries and several heart catheterizations. Her heart surgeon, Dr. Christian Pizarro, assisted by cardiac anesthesiologist, Dr. Ellen Spurrier, and their highly specialized team—cared for her–watching over Emilee day and night. It was a scary and unsettling time for her family, who stayed right by her side. Through it all, Emilee thrived. But her health challenges continued.  Emilee was diagnosed with scoliosis that progressed to the point that surgery was needed.  In January 2022, she underwent a spinal fusion, a major surgery for anyone, but especially risky for someone with a single ventricle heart defect. Pediatric spine surgeon, Dr. Peter Gabos, performed the complicated operation with Dr. Spurrier again […]

teenage girl refusing sandwich

STAYING HEALTHY

Is Gluten to Blame for Your Teen’s Gastrointestinal Problems?

Diarrhea. Abdominal pain. Bloating. Ugh!!! These annoying symptoms can occur in many gastrointestinal problems that teenagers experience. On social media, on the bleachers a school sports events, at doctors’ appointments, it seems like everywhere people are talking about gluten. What is gluten? Gluten is a group of proteins commonly found in wheat, barley, oats, and rye. It affects the dough quality of breads and is added to processed foods to improve texture, moisture, and flavor. When should a teenager go gluten-free?   When they are diagnosed with a problem caused by gluten. Celiac disease, wheat allergy, and gluten intolerance involve gluten, but are not one and the same. Celiac Disease Celiac disease is an autoimmune disease where gluten triggers the body’s immune system, which normally makes antibodies to fight off harmful invaders like viruses or bacteria, to make antibodies against itself. These “autoantibodies” damage villi, finger-like projections lining the small […]

PARENTING

What to Do During the Baby Formula Shortage

You may have noticed a shortage of baby formula on store shelves these days. The COVID-19 pandemic has caused supply chain and staffing issues, and a recent recall of baby formula due to contaminated products from one factory has added to the problem. If you are formula feeding your baby, you may worry about how you will continue to feed your little one. Here are some tips on how to navigate the baby formula shortage. What to do: Talk to your baby’s doctor, who may have some sample cans of formula available. You can also call a local hospital, breast milk bank, or office of WIC (the federal Special Supplemental Nutrition Program for Women, Infants, and Children). Women’s shelters, food banks, and faith-based organizations might also be able to help. Shop around. Try other stores that you may not have visited in the past, especially smaller independent grocery stores, pharmacies, […]

COMMUNITY CONNECTION

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

SERVICES & SPECIALTIES

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 […]

SERVICES & SPECIALTIES

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 […]

COMMUNITY CONNECTION

A Damaged Liver that Led to a Liver Transplant- Jeylainie’s Story

Jeylainie’s life as a normal 9-year-old changed abruptly in September 2021. Her mother, Keyla, noticed that Jeylainie’s skin was turning yellow and becoming jaundiced. Soon after, Jeylainie started complaining of a stomachache that would not stop. Her mother took her to a local children’s hospital, where she was admitted. Her doctors initially thought she had kidney stones, then did a biopsy to determine what was wrong. But Jeylainie’s health continued to deteriorate rapidly. After her doctors spoke with Nemours Children’s Solid Organ Transplant team, Jeylainie was transferred to Nemours Children’s Hospital, Delaware for more specialized care. Jeylainie’s diagnosis was hepatitis, an acute inflammation that causes damage like scarring to the liver. Since her liver was so damaged, she needed a liver transplant quickly. Keyla says, “It was crazy – Jeylainie is a healthy eater who loves her veggies, it was surprising to see her health go downhill so quickly.” While […]

Is My Child Gambling? Signs Parents Should Look Out For

CONSTRUCTIVE CONVERSATIONS

Is My Child Gambling? Signs Parents Should Look Out For

Everyone is talking about “March Madness.” Many are tracking their brackets and bets closely. There is plenty of fun to be had cheering for our favorite basketball teams, but it’s also a good time to talk to your child about gambling. You may think this conversation can start when your child is old enough to step into a casino. But for many kids, gambling starts much earlier. Sports betting, lottery tickets, and card games often start in middle school. Some online games bring gambling right to kids’ phones and computers. And these days it’s hard to turn on the TV without seeing a commercial glamorizing the many new avenues for wagering. Here is some information to help you talk with your kids about gambling. What Is Online Gambling? Online gambling is any gambling done through the internet. Common types of online gambling include casino games (poker, slot machines) and sports […]

COMMUNITY CONNECTION

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 […]

COMMUNITY CONNECTION

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 […]

Page 33 of 59

Page 33 of 59

Page 33 of 59