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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 […]

Keeping your child healthy and strong. Children with sickle cell disease (SCD) have lower levels of certain vitamins, minerals, proteins and other nutrients. That’s because their bodies turn over red blood cells so fast that nutrients are broken down faster than normal. When the body doesn’t get the nutrients it needs, it leads to malnourishment, anemia (low iron), frequent infections, poor growth and development, and other complications. At the Nemours Children’s Center for Cancer and Blood Disorders, our team incorporates nutrition into the overall treatment plan for kids with SCD. We know that good nutrition helps to support growth, restore energy, improve immunity and strengthen muscles and bones. Good nutrition can also reduce pain crisis and the side effects of certain treatments. This can help decrease the number of hospital visits and improve overall health as your child grows. Essential Vitamins and Minerals for SCD A child with SCD takes […]

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, […]

On her first day of kindergarten on September 20, 2010, Molly Katherine Dunne was a seemingly healthy girl until she collapsed as she arrived at school. She was taken to Nemours by ambulance. After some testing, she went home with plans to follow up on an out-patient basis. However, the next night her condition worsened so we returned to Nemours where she was admitted. After many tests, Molly was diagnosed with Pulmonary Hypertension. Things happened quickly and we knew little of what this diagnosis meant. Molly underwent a cardiac catheterization to help determine a treatment plan and next steps. While in the catheterization lab, she had some complications followed by a cardiac arrest. She was revived but was not stable so she was placed on ECMO also known as heart-lung bypass. Over the next few days, attempts to wean from ECMO were unsuccessful. Molly was transferred to another children’s hospital […]

You’d never know it today, but 10-year-old Axel was born with an absent right ear, which was noticed at birth. His condition is defined as microtia, and refers to a missing or an abnormal ear, and can involve one or both ears. Newborn hearing tests revealed that, besides missing his outer ear, Axel did not have a normal hearing ability on the right side. Fortunately, Axel didn’t have any other medical conditions that required early treatment. As he grew up, it became increasingly hard to deal with the appearance of having a missing ear. “Sometimes kids at school would bully him for not having a full ear,” says his mother, Juana. “It made him feel like he wasn’t a normal kid.” In addition to being seen by Nemours Children’s Audiology and Otolaryngology teams, Axel was referred to Plastic Surgery to discuss options for treating his ear difference. A staged ear […]