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Journey’s Microtia Story – Mother’s Words

Emily Baez remembers being in the delivery room when she noticed that something was different about her newborn daughter’s ear. “You count toes, you count fingers, but you don’t think for a second to check any other body part… especially an ear,” she says.   Microtia is a rare birth defect in which the external ear is not completely developed. It affects about one in every 5,000-7,000 babies born annually. “When she was born, I didn’t know anything about it, I had never heard of microtia, so I started with social media first,” she says. This is when Emily became involved in The Ear Community online, searching hashtags and connecting with other affected families. “It actually helped make my grieving process a lot better.” After struggling to identify a health care provider that accepted their insurance, Emily found Nemours Children’s and instantly knew she was in the right place to […]

Esperanza de un Guerrero – La Historia de Sebastian

En mayo de 2022, Sebastián llego triste de la escuela. Estaba yo preocupada por él. Pensé que tal vez alguien era un bully, pero me aseguró que estaba inusualmente cansado. Al día siguiente era lo mismo, y tenía fiebre, así que lo llevé al médico que le diagnosticó una infección de estómago y le recetó antibióticos. Mejoró, pero no pasó mucho tiempo antes de que regresaran los mismos síntomas. Fuimos a otro médico que dijo que era lo mismo y nos recetó aún más antibióticos. Me pregunté cómo podría ser una infección del estómago si no tenía síntomas gastrointestinales, pero seguí lo que dijo el médico. Pero luego se agregó la respiración rápida a sus síntomas y supe que algo más estaba pasando, así que esta vez lo llevé al hospital. La respiración era tan rápida que me asustó. Pensaron que era bronquiolitis y prescribieron un tratamiento con nebulizador. Cuando […]

Hope of a Warrior – Sebastian’s Story

To read this in Spanish, click here! One day in May of 2022, Sebastian came home sad after school, causing me to worry about his unusual behavior as he is a very happy child. I asked Sebastian if something was wrong and if he was being bullied at school. He assured me he was just unusually exhausted. The following day, Sebastian was in the same down mood, but had a fever this time. I took Sebastian quickly to our local doctor, where he was diagnosed with a stomach bug and prescribed antibiotics. He eventually felt better, but not much time passed before the same symptoms returned. We went to another doctor who gave him the same diagnosis and prescribed more antibiotics. I wondered how it could be a stomach bug if he had no GI symptoms, but I followed the doctor’s advice. Rapid breathing was later added to Sebastian’s symptoms, […]

Epilepsy Awareness Month- Chloe M’s Story (Mother’s Words)

On May 30th, 2021, Chloe was having a typical night playing with her toys. She was smiling and giggling like always, and suddenly she stopped her energetic pacing between toys and randomly fell to the floor. She became limp and stopped breathing. Her lips and feet turned purple right before she became conscious again. No one knew why this happened because she’d never experienced anything like it before. An ambulance arrived, and Chloe was taken to Nemours, where she was diagnosed with epilepsy following a second episode that occurred in the hospital. Despite a quick diagnosis, there was still a long road ahead to gain seizure control. Chloe’s days went from cheerful playing and adventures to constant seizures, which made her feel sick and exhausted. She was unmotivated to do anything. Her toys were barely touched, and she couldn’t sleep through the night without multiple seizures. Eating food became a […]

ADP Celebrates 100th Delivery

Nemours’ Advance Delivery Program is designed for healthy moms-to-be whose babies will need complex care from the moment they’re born.

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 […]

Ashley's Epilepsy Story -- From Fear to Fearless

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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