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Patient Stories

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 […]

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 […]

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, […]

One evening shortly before Aiden’s 7th birthday, his father noticed Aiden was unable to speak, drooling, and had a facial droop with left sided weakness. I was working as a pediatric nurse at a community hospital, where he brought Aiden. We thought he was having a stroke.  He was transferred to the Emergency Department at Nemours Children’s Hospital, Delaware, where he had a full work up and was diagnosed with epilepsy and started on medications within 24 hours of arrival. Aiden tells us he had several episodes before anyone saw him and was very scared.  Fortunately, we don’t think he had many seizures before treatment. It still impacted his life, unfortunately limiting some of his activities, however he is definitely coming into his own and doing so well. He even wants to go into the medical field to be a surgeon. Epilepsy and the resulting seizures were a frequent part […]

Meet Chloe. Chloe was diagnosed with Epilepsy as an infant after experiencing chronic seizures. Prior to receiving treatment at Nemours Children’s Health, Chloe found it difficult to participate in daily tasks such as school or social activities. “Stomach pains, shaking and an inability to focus were just a few things that would happen to me daily,” Chloe shares. With the expert care provided by our neurology team, Chloe was able to gain a better understanding of her condition, symptoms and began to navigate life, discovering her own path. “It is still sometimes surreal to know that I am less limited when it comes to having to do what someone would consider ‘normal.’ Go to school, be away on a vacation, go out shopping or just not have the constant worry of when and where a seizure may happen.” These days, Chloe is looking forward to her bright future as she […]

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 […]