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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 […]

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 […]

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 […]

SAFETY & PREVENTION

Melatonin: 5 Safety Tips for Kids and Teens

We all know that terrible feeling of not being able to sleep and drudging through the next day in a fog. If your child is having trouble sleeping, of course you want to help. You have probably heard of using melatonin for sleep problems. Its use has skyrocketed in the past few years. Melatonin is a hormone (or chemical messenger) made by the brain. It helps us fall asleep. Melatonin is also made as a dietary supplement and can be bought in the U.S. without a prescription. But is melatonin safe for kids and teens? Does it work? If melatonin is used with guidance from a health care provider, it is probably safe for short-term use in kids over 5 years. It can help kids and teens get some rest while they work through certain types of sleep problems. But it is still being studied so we don’t know for sure what […]

COMMUNITY SUPPORT

Ways You Can Support the People of Ukraine

Showing kids how to turn empathy into helpful action, they learn they can make a difference. You and your children may be anxious about the war in Ukraine. It’s important to answer any questions your kids may have. But you can also turn your family’s empathy into meaningful action by finding ways to support the people of Ukraine. Exploring how to help and explaining that our country is supporting relief efforts can make it easier for children to process these tragic events. Here are a few ways that families can offer support: Donate to a Verified Charity Kids can feel more of a connection to aiding in relief efforts if they understand who they are helping and how. Families can read about the charities that are accepting donations and choose one together. Below are a few organizations that are specifically assisting Ukrainian children and families. UNICEF: This humanitarian organization works to […]

PARENTING

How to Avoid Putting Too Much Pressure on Kids

We all want our kids to succeed, to be happy, and for things to go smoothly. It’s hard to see our kids let down, or disappointed, but as we just saw in the Olympics, disappointment and let down happen to even the most talented of humans. Instead of protecting our kids from feeling frustrated, or failing, or being disappointed, we should be encouraging it! Learning how to navigate tough feelings, especially feelings we know will occur throughout their lives, is important for kids. And parents can help! Let Things Go Wrong As hard as it may be, the first step to helping kids learn what to do when things go wrong is — let things go wrong. These can be simple things like: not forcing them to practice a sport more when they have a game the next day not bringing the homework they forgot to school even if it […]

PARENTING

Talking to Your Child About the War in Ukraine

As conflicts in Ukraine escalate, children may see and hear things about the crisis through news headlines, social media, friends discussing the topic at school, or overheard conversations from adults. Situations like this can lead to feelings of uncertainty, anxiety, and fear. Children might have questions about the images, stories, and conversations they are seeing and hearing. Parents and caregivers should address them. Here are some tips on how to approach these conversations with children: Find Out What They Know Ask your kids questions to find out what information they already know about. They may have formed a completely different picture of the situation than you have. Take the time to listen to what they think, and what they have seen or heard. Consider your child’s age and development. Younger kids may not grasp the difference between fact and fantasy. For most kids, it’s not until they are 7 or […]

COMMUNITY CONNECTION

Fearing the Worst from a Cleft Lip Diagnosis: Skyler’s Story

Contributed by Skyler’s mom Danielle. At my 20-week ultrasound, I couldn’t wait to learn if I was having a boy or a girl. It was gender reveal day, but it also turned out to be the day I learned that my little girl, Skyler, would be born with a cleft lip. Before meeting Dr. Edward J. Caterson, a cleft surgeon expert at Nemours Children’s Hospital, Delaware and, his nurse practitioner, Kim Giordano, MSN, CPNP- BC, CORLN, I was so scared, fearing the worst. But as soon as I met them, I felt a huge sense of relief. Most importantly, Dr. Caterson and Kim were always there for me when I needed them most—to answer my questions or to just reassure me. Quite surprisingly, when Skyler was born she had no trouble latching on and breast-feeding despite her cleft lip. She has continued to surprise us, with her resiliency after […]

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