Nemours Blog - Page 13 of 33 - Powered by Nemours Children's Health System

Olivia’s Story – Trisomy 18 Awareness Day

Brooke Renton’s life changed substantially when her daughter, Olivia, was born in March 2021, both in the physical sense (the family permanently relocated from Tallahassee to an Orlando suburb to be closer to Nemours Children’s Hospital, Florida) and in the emotional sense when she knew she would do anything for her sweet baby girl.   Born with a rare chromosomal condition called Trisomy 18 at a hospital in Tallahassee, Olivia had to be on a ventilator for the first 11 days of her life. The day before she was supposed to go home, doctors had to perform lifesaving CPR and place Olivia back on a ventilator. Olivia’s heart was “pouring blood into her lungs” due to a hole in her heart known as a ventricular septal defect. NICU doctors in Tallahassee told the family that Olivia would need a specialized center that performed advanced pediatric heart surgery to correct the issue. Due […]

Raymond’s Story (In Mom’s Words)

My name is Alex Gaudlap. Also known as Raymond’s mom. Our journey with Nemours Children’s Health started in the fall of 2017 when we relocated back to New Jersey from Camp Lejeune, North Carolina due to Raymond not hitting developmental milestones appropriately. The doctors down South assured me Raymond was fine, but my motherly instinct told me he wasn’t. From the moment we stepped foot into Nemours Children’s, I felt like our concerns were listened to. Raymond’s first appointment at Nemours was with a neurologist in the Deptford location. Since we were new patients and basically starting from the beginning with tests, she ordered a routine EEG. We never would have thought that his first test would give us answers, but it did. Raymond was diagnosed with a rare form of epilepsy; that gave us some indication to why he had a global developmental delay. After receiving the epilepsy diagnosis, […]

Rare Disease Day: Reynolds’s Story (In Dad’s Words)

On December 8, 2017, my wife Ashley delivered our twins, Reynolds, and Campbell. She gets all the credit. I didn’t do any of the heavy lifting. We always knew that Baby A was larger than Baby B, but we didn’t know why. And we had no idea that there were going to be complications at birth. The boys were born at 36 weeks via C-sections, immediately whisked away and taken to the NICU. Reynolds was eventually transferred to another NICU, while Campbell just needed a little more time to grow. So, Reynolds and I left Ashley and Campbell to go to a children’s hospital in Little Rock, Arkansas, where we ultimately spent 103 days in that NICU. He had airway issues. He had cardiac issues. He had GI issues. And throughout that entire time in the NICU, doctors knew that there was some underlying reason causing these issues, but no […]

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 […]

Cochlear Implant Awareness: A’miyah’s Story

A’miyah was referred to the Cochlear Implant Program at Nemours Children’s Hospital, Florida, where she was evaluated, and was determined to be a candidate for cochlear implantation.

Nutrition in Sickle Cell Disease

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 […]

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, […]

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 […]

World Childhood Cancer Awareness Day: Ethan’s Story

Nine months ago, Annie and Ben Grayshan got the news no parents ever want to hear, “Your child has cancer.” Their son Ethan was 7 years old when recurring vomiting led to a visit with his pediatrician in April 2022. His doctor suspected a stomach bug. The vomiting persisted and Ethan was sent for allergy testing and then to a GI specialist. After starting antibiotics for a potential parasite, Ethan began to experience fatigue and headaches, common side effects of the antibiotics. But after a few days with no improvement, his parents took him to an ER where a CT scan showed a mass on Ethan’s brain. The Grayshans were then airlifted to the ER at Wolfson Children’s Hospital in Jacksonville. Within 48 hours he had undergone two brain surgeries. One to relieve the hydrocephalus, which had been causing his symptoms, and another to remove the tumor. A diagnosis of […]

Serving Up Inspiration: Capucine’s Story

Win or lose, 15-year-old Capucine Jauffret never gives up. Her mom and dad, Jennifer and Christophe, attribute Capucine’s instinctive determination to a time when she had to fight for her life—a time Capucine won’t remember, and her parents won’t ever forget. When Capucine was born, doctors heard loud murmurs in her heart and diagnosed her with a congenital heart defect called Tetralogy of Fallot, which causes oxygen-poor blood to flow out of the heart and into the rest of the body. At just 17-days-old, Capucine had life-saving open heart surgery to repair her heart. “We are incredibly blessed the doctors were able to perform the operation before Capucine had any significant problems,” said Jennifer. “Fortunately, technology changed, and we didn’t have to wait until she was older and her heart was bigger like other children with this condition have in the past.” “I was thrilled and delighted to hear about […]

Page 13 of 33

Page 13 of 33

Page 13 of 33