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Community Connection

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 […]

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 […]

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 […]

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 […]

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, […]

How did two children’s healthcare organizations in Jacksonville, Florida care for kids 7,000 miles away? Jonathan Soud was a 12-year-old patient at Wolfson Children’s Hospital and Nemours Children’s Health, Jacksonville, being treated for leukemia. During his treatments, his doctors and family spent a lot of time talking to him about his interests in travel and other cultures, especially the country of Mongolia. Eric Sandler, MD, is a pediatric hematologist/oncologist at Wolfson Children’s Hospital and chair of the department of pediatrics at Nemours Children’s Health, Jacksonville. He developed a special bond with Jonathan during treatments, sharing his own fascination with distant lands. Dr. Sandler also discovered that Jonathan had an interest in serving others. “After he passed away, his parents came to me and said they wanted to figure out a way to honor Jonathan’s memory,” said Dr. Sandler. “Since we had had all those conversations regarding Mongolia, his family decided to […]