Through our Raising Resilient Kids series, we’re hoping to help parents by offering free, trusted, expert answers.
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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 […]
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 […]
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 […]
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 […]
Living a Full Life with Osteogenesis Imperfecta: Adira’s Story
Contributed by Adira’s mom Ashley. The first inkling that something wasn’t right came at my first ultrasound. My baby’s femur was bent at a 90-degree angle when it was supposed to be straight. A subsequent ultrasound showed fractures in her skull and irregular shaped ribs. I was referred to a large prenatal referral center for an amniocentesis that confirmed a diagnosis of Osteogenesis Imperfecta (OI). Consultations with the prenatal group suggested that this form of OI was very severe and incompatible with life. I was devastated and searched the internet to find help. Miraculously, I connected with a mother who had been in a similar situation. She referred me to the Osteogenesis Imperfecta Program at Nemours Children’s Hospital, Delaware. We met the entire OI team the same day and geneticist, Dr. Michael Bober told us, “I promise you that we will do everything we can for your baby.” Additional […]
To Mask or Not to Mask? Good Question.
Across the country, states are beginning to lift universal mask mandates, including in schools. However, COVID-19 still poses a risk for many families, especially for children too young to be vaccinated. What is a parent to do? Dr. Salwa Sulieman, an infectious disease specialist at Nemours Children’s Hospital, Delaware and a mom of three suggests looking to the numbers to help you make a decision about whether to continue wearing a mask, despite the lifted mandates. Look at the Numbers “I base masking recommendations on what the numbers in the community are doing. I tend to think about incidence of COVID-19 infection per 100,000 persons, which you can find on most state health department websites,” says Dr. Sulieman. Dr. Sulieman recommends considering optional masking when your state begins reporting an incidence rate of 50-100 cases per 100,000 persons. When your state gets to less than 10 per 100,000, there’s very […]
A Heart to Remember: Vea’s Story
For the Tsoflias family, the past year has been a roller coaster of emotion, disbelief, heartbreak and ultimately, hope. It all began when a routine 20-week ultrasound revealed an abnormality. Brittany, an expectant first-time mom, was referred to Nemours Children’s fetal cardiologist, Shubhika Srivastava for a fetal echo and soon learned that her baby had a very rare congenital heart defect called Ebstein’s Anomaly. The defect is linked to an abnormality in the tricuspid valve, causing it to leak and if left unchecked, would result in heart failure. To correct the defect, surgery would be required. Knowing that her baby would need highly specialized heart care immediately after birth, Brittany delivered Vea through the Advanced Delivery Program at Nemours Children’s Hospital, Delaware. “What an amazing experience. I felt special, says Brittany, because everyone went above and beyond for me.” Recognized as a surgical expert in this type of complex heart […]
The Emotional Rollercoaster of a Cleft Lip and Palate Diagnosis: Fred’s Story
It was a wonderful yet traumatic time in our lives. Even with the support and love from our families and friends, we still felt alone and confused. Who could possibly know what it’s like to be told that your beautiful baby boy will be born with a cleft lip and palate? We were referred to Dr. E.J. Caterson, Chief, Plastic Surgery at Nemours Children’s Hospital, Delaware. During our first visit, Dr. Caterson shared with us that his passion for craniofacial surgery had been influenced by his youngest son who had been born with a cleft lip. We immediately felt heard and understood on so many levels. His soft-spoken and kind demeanor, along with his genuine concern calmed our fears. His detailed surgical plan inspired confidence. We trusted him. Fred had his first corrective surgery at 4 months. He also had a GPP, which is not done at many institutions. The GPP […]
Advocating for Maternal and Child Health – Why It’s Essential
About 700 mothers die each year from pregnancy-related causes in this country, with about 60% of these deaths considered to be preventable. Black mothers are 3-4x more likely to die from pregnancy-related complications than White women, and are at higher risk of giving birth to pre-term babies. Black babies are 2x more likely to die as infants than White babies. The Nemours National Office is advocating on Capitol Hill to address these disparities to help give all moms and babies the opportunity to be healthy. Along with March of Dimes (MOD), Children’s Hospital of Philadelphia (CHOP) and the Ann & Robert H. Lurie Children’s Hospital of Chicago, we are partnering on the Hot Topics in Neonatology: 2021 Cindy Pellegrini Maternal & Child Health Advocacy Event. This virtual event honors Cindy Pellegrini who passed away in 2019, leaving behind a legacy as a tireless advocate for maternal and child health. It […]
Ashley’s Epilepsy Story — From Fear to Fearless
It was like any other ordinary day for 13-year-old Ashley. In eighth grade at the time, Ashley, from Washington Township, New Jersey, came home after a long day at school, hoping for a quick nap before heading to youth group that night. She headed to her fridge to grab a drink, and the next thing she remembers is waking up with paramedics surrounding her. “I was placed on oxygen and had an IV in my arm,” says Ashley, now 24. “The only thing that came to my mind was fear.” Ashley learned from doctors at her local hospital that 1 in 26 people may have a seizure within their lifespan, epilepsy related or not. After her electroencephalographs (EEGs) and an electrocardiography (EKG) results came back normal, Ashley and her family waited to see if she had any more seizures to determine if it might be epilepsy. “I had so much […]
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