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Understanding a Diagnosis

A Chiari malformation is a condition in which the lower part of the brain — called the cerebellum — extends into the spinal canal, where it doesn’t belong. Chiari (kee-AH-ree) malformations are more common than previously known, affecting approximately 1 in every 1,000 people. Due to advances in MRI technology, they’re being identified more frequently and earlier than ever. Here’s what families should know. What is Chiari malformation?  Chiari malformations are congenital (present at birth) in nearly all cases. The issue typically develops while a fetus is growing but, depending on the Chiari type, a person may not experience symptoms until later in childhood, adulthood, or possibly never. The condition is named for German pathologist Professor Hans Chiari, who described it in the 1890s and established the Chiari Types I through IV classification still used today. One important distinction is that Chiari Type II (Arnold-Chiari malformation) is always associated with […]

A diagnosis of childhood lupus can feel overwhelming at first, for both children and the people who love and care for them. Because lupus can affect many parts of the body, and its symptoms may change over time, families often find themselves learning to navigate not only medical care, but also school, emotions, daily routines, and long-term uncertainty. The good news is that families do not have to face this journey alone. Whether you’re managing lupus symptoms, seeking lupus treatment, or still early in your child’s diagnosis and simply trying to understand what it means going forward, you need guidance. Along with support from their medical team, there are many organizations and communities that can offer practical help, trustworthy information, and meaningful connection. Connect With Support Groups Living with lupus can sometimes feel lonely, but families should know they are not alone. There’s a strong lupus community with many opportunities […]

When expectant parents receive news of a fetal diagnosis or structural difference during pregnancy, the experience can feel overwhelming. The journey that once seemed straightforward suddenly becomes filled with medical appointments, difficult decisions, and sometimes significant uncertainty. The impact of a fetal diagnosis on maternal mental health is profound. What many parents don’t realize is that while their emotional responses are an individual reaction to a challenging new time for their family, these emotional responses can simply be part of the drastic deviation from the expected, or they can be signs and symptoms of perinatal mood and anxiety disorders — which are more prevalent in expectant parents facing care in a fetal center. In addition to having an informed awareness of risk factors for perinatal mental health disorders, recognizing the unique emotional challenges families face is a centerpiece of a fetal center’s collaborative care. Mental health screening is a stepping […]

Managing a chronic condition like Type 1 Diabetes (T1D) is never easy, especially for children and adolescents. It requires constant attention to blood sugar levels, insulin administration, and carbohydrate intake, among many other factors. But there is a lesser known obstacle to this condition that often goes overlooked: mental health struggles, specifically, depression. Alexandra Monzon, PhD, a clinical pediatric psychologist with Nemours Children’s Hospital, Florida, is working to provide targeted mental health interventions for children with T1D. Why Depression is More Common in Kids with Type 1 Diabetes Dr. Monzon explained that T1D is stressful for young patients due to its demanding and constant nature — it requires patients to “be their own pancreas.” The continuous effort to regulate blood sugar through diet and insulin shots can lead to patients being overwhelmed, anxious, and depressed. Dr. Monzon noted that symptoms can overlap and intensify in patients with Type 1 diabetes […]

Nemours Children’s Health cancer research shows parents and providers may disagree on how to prioritize support The Emotional Side of Childhood Cancer Care When a child is diagnosed with cancer, parents and care teams share the same goal: making sure the child gets the best care possible. But pediatric cancer care goes beyond treatment. Children and families facing a cancer diagnosis often need psychosocial resources like mental and emotional support. New cancer research from Nemours Children’s Health shows that while both parents and healthcare providers agree that these resources are important, they don’t always agree on which ones should come first. Inside the Research: Exploring Priorities in Family Support In 2015, experts and cancer advocates, including Nemours Children’s researchers, published the first Standards for the Psychosocial Care of Children with Cancer and their Families. These guidelines define best practices for this area of pediatric oncology care and how to best […]

September is Childhood Cancer Awareness Month — a time to honor the strength of children and their families navigating the challenges of a cancer diagnosis. Alongside doctors and nurses, Child Life Specialists play a vital role in supporting young patients and their families cope with the emotional and developmental impacts of cancer, guiding them through what can be an overwhelming journey. In this Q&A, we had the opportunity to speak with Joli Craver, one of our Child Life Specialists at Nemours Children’s Health, who works in the PLAYERS Center for Cancer and Blood Disorders. Joli provided valuable insights for friends, classmates, neighbors, and extended family who are looking to offer meaningful support. Whether it’s knowing what to say, how to help, or simply how to be present, her perspective can help you feel more confident in showing up for children with cancer and their families during their most challenging moments. […]