POSTED BY:
Guest Contributor

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 […]

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 […]

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 […]

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 […]

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 […]