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 […]

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 […]

We know eating fruits and veggies can provide tons of health benefits and are an important part of a balanced diet. But why is it so important to “eat the rainbow?” Fruits and veggies are dense in phytochemicals and micronutrients – vitamins and minerals – that our bodies need to function properly and grow, but not all fruits and veggies are equal. Depending on the color, different nutrients may be more abundant in some fruits and veggies than in others. Let’s explore how eating the rainbow can provide our bodies with different nutrients and what they can do for us!   Red Orange/Yellow Green Blue/Purple White/Brown Examples Raspberries, strawberries, tomatoes, red bell peppers, cranberries, and watermelon Oranges, orange bell peppers, carrots, mango, yellow bell peppers, yellow squash, lemons Leafy vegetables, broccoli, kale, kiwi, avocado, green grapes, cucumbers, peas, zucchini Blueberries, blackberries, eggplant, plums, purple cabbage, purple grapes Bananas, cauliflower, ginger, […]

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 […]

Did you know that winter months are peak time for fire-related deaths? In the event of a fire, you may have as little as two minutes to escape. Home and apartment fires can start and spread quickly. It is important to create a fire escape plan and practice it regularly with your family. Create a Fire Escape Plan The best way to start planning a fire escape plan according to the National Fire Protection Association (NFPA) is to draw a map of your home or apartment showing all doors and windows. The NFPA says families should: Plan two ways to escape from each room. Make sure all doors and windows leading outside open easily. Identify secondary routes: a window onto an adjacent roof or a collapsible ladder from a second-floor window. If you live in a multi-story building, plan to use the stairs – never the elevator. Designate an outside meeting […]

Kids tend to gain more weight during extended breaks from school, like over the summer. We’ve seen a similar trend when COVID-19 restrictions were in place. A recent report from the Centers for Disease Control and Prevention (CDC) showed kids gained weight more quickly during the early months of the pandemic as compared to the previous year. There are many reasons why, but it seems without the structure of school many kids eat more and move less. The COVID-19 pandemic really messed up our daily routines. School closures, remote work, and stay-at-home orders meant going to bed later, eating at different times, snacking more, being less active, and spending more time in front of screens. This fall, things started to get back to normal as children returned to school and other activities. But just as we have gotten back into our routines, here come the holidays. Holiday weight gain is […]