Raising Awareness Archives - Nemours Blog

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Raising Awareness

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 […]

Cerebral Palsy Awareness Month: Logan’s Story

During the first trimester of her pregnancy, Christine Miller learned her son, Logan, was diagnosed with congenital cytomegalovirus infection (CCMV). Christine was told that her son was dying in utero and would likely not survive the birth. Since the CCMV diagnosis, the Miller family has been in constant contact with the infectious disease department at Nemours Children’s Health. At 32 weeks pregnant, Christine underwent an emergency C-section and Logan was born, weighing just 3 pounds. Immediately following birth, multiple calcifications were discovered on Logan’s brain. At this time, Logan was also diagnosed with Cerebral Palsy. Fast forward 18 years, Logan and the Miller family still have a very close relationship with Nemours. In 2021, Logan had his first appointment with Dr. Shrader (Dr. Dabney followed Logan since birth). At first, Dr. Shrader was very pleased with Logan’s movement and progress from his previous hip surgeries. “But after talking with him […]

Personal Trainers and Athletic Trainers: What is the difference?

Personal TrainersPersonal trainers are found in gyms, health clubs, and even online as fitness influencers. Their goal is to help the general public achieve their fitness goals. Their clients can range anywhere from beginners to body builders, and they usually require a fee. Personal trainers are a great resource for cardio exercises, weightlifting techniques, and nutrition advice. There is no degree required to be a personal trainer. However, many have certifications that allow them to evaluate their clients and recommend exercises and nutrition regimens. While personal trainers are a very helpful asset to a person’s health and wellness, their role differs greatly from athletic trainers. Athletic TrainersAthletic trainers can be found in high schools, colleges, orthopedic offices, physical therapy clinics, hospitals, professional sports teams, military sites, and even in corporate and industrial settings. They provide athletes of all ages with preventative services, emergency care, therapeutic interventions, clinical diagnosis, and injury […]

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, […]

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, […]

Aiden’s Story (Mother’s Words)

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 […]

Layers of Protection, Including Swim Lessons, Help Prevent Child Drownings

The pandemic has put many children behind on swim lessons. The AAP (American Academy of Pediatrics) is alerting parents that swim lessons for children over 1 year are an important part of the layers of protection that can help prevent drownings. So, schedule those swim lessons for your kids and use all these layers of protection to help prevent drownings: Water Watcher There should always be an adult water watcher while children are in and around a pool. For young children and beginner swimmers, the water watcher should be within arm’s length. For older children who can swim, the water watcher should have their eyes on the children at all times. The water watcher should not be using a cellphone, socializing, drinking alcohol, or doing anything else that might be distracting. At a party, have adults take turns as water watcher. Even if a lifeguard is on duty, a water […]

Ways You Can Support the People of Ukraine

Ways You Can Support the People of Ukraine

Showing kids how to turn empathy into helpful action, they learn they can make a difference. You and your children may be anxious about the war in Ukraine. It’s important to answer any questions your kids may have. But you can also turn your family’s empathy into meaningful action by finding ways to support the people of Ukraine. Exploring how to help and explaining that our country is supporting relief efforts can make it easier for children to process these tragic events. Here are a few ways that families can offer support: Donate to a Verified Charity Kids can feel more of a connection to aiding in relief efforts if they understand who they are helping and how. Families can read about the charities that are accepting donations and choose one together. Below are a few organizations that are specifically assisting Ukrainian children and families. UNICEF: This humanitarian organization works to […]

Advocating for Maternal and Child Health – Why It’s Essential

Advocating for Maternal and Child Health – Why It’s Essential

About 700 mothers die each year from pregnancy-related causes in this country, with about 60% of these deaths considered to be preventable. Black mothers are 3-4x more likely to die from pregnancy-related complications than White women, and are at higher risk of giving birth to pre-term babies. Black babies are 2x more likely to die as infants than White babies. The Nemours National Office is advocating on Capitol Hill to address these disparities to help give all moms and babies the opportunity to be healthy. Along with March of Dimes (MOD), Children’s Hospital of Philadelphia (CHOP) and the Ann & Robert H. Lurie Children’s Hospital of Chicago, we are partnering on the Hot Topics in Neonatology: 2021 Cindy Pellegrini Maternal & Child Health Advocacy Event. This virtual event honors Cindy Pellegrini who passed away in 2019, leaving behind a legacy as a tireless advocate for maternal and child health. It […]

Should kids participate in the Hot Pepper Challenge for ALS?, Powered by Nemours Children's Health System

Should kids participate in the Hot Pepper Challenge for ALS?

This post originally appeared on Philly.com By now you’ve probably heard about the Hot Pepper Challenge for ALS which began gaining popularity this month. After NBA writer Tom Haberstroh found out his mother was diagnosed with ALS, his family started the Hot Pepper Challenge in December to raise money for research — a similar idea to the Ice Bucket Challenge in 2014. People are nominated on video and encouraged to donate to the cause. Should Your Kids Take Part? Challenges like this are done in good fun and help to raise awareness and funds for important causes. But as a pediatrician, I have mixed feelings about children participating in the pepper challenge. Here’s why. Hot peppers can cause some unpleasant symptoms due to a chemical compound called capsaicin. Most of the capsaicin is in the seeds and membranes, so remove these parts if you’re worried about the heat. Among other things, capsaicin […]

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