Community Connection Archives - Page 26 of 31 - Nemours Blog | Expert Health and Wellness Guidance for Parents

ARTICLES RELATED TO:
Community Connection

Apifix: A Unique New Scoliosis Treatment Option

Contributed by Kevin Neal, MD, orthopedic surgeon What is the Apifix device that is used to treat scoliosis? The Apifix device has a few different names. It can also be called minimally invasive deformity correction (MID-C) or an “internal brace.” The Apifix device is a rod that is used to straighten scoliosis curves without a major spine fusion. Why do some patients want to avoid spine fusion? A spine fusion is where the vertebral bodies are stabilized so they can’t move, typically with rods and screws. The joints between the vertebrae bones are removed and bone graft is placed to help the vertebral bodies grow together and become solid. Preventing movement of the spine keeps scoliosis curves from getting worse and keeps the spine straight after it has been corrected. Spine fusion is a great operation for many patients with scoliosis. But some patients want to treat their scoliosis without […]

Wait No More: Nearly All Kids Can Now Get the COVID-19 Vaccine

Many parents are breathing a sigh of relief that they can finally get their babies, toddlers, and preschoolers vaccinated against COVID-19. Two brands of the vaccine have now been authorized for children as young as 6 months old, so the little ones can now join the ranks of people ages 5 and up who have helped protect themselves. So does your young child really need a COVID-19 vaccine? After all, younger children often have milder illness when they get infected. The answer is a resounding “yes,” since many young children have had serious symptoms requiring hospitalization, and some have even died. Small children can even develop long COVID, with symptoms that bother them for a long time. Parents might also wonder why it took so long for the vaccines to be authorized for this age group. It took a long time to get the vaccines authorized for young children because […]

Overcoming Scoliosis- Alexis’ Spine Story

Contributed by Alexis. At the age of twelve when I hit puberty, my back started bothering me a lot. I made an appointment with my pediatrician, where I learned I was developing scoliosis. She referred me to Nemours Children’s Hospital, Delaware, where I met with pediatric orthopedic surgeon, Dr. Suken Shah for further examination. After an x-ray, we found that I had two curves measuring 22 and 23 degrees. A few months later, I received a brace to prevent my spine from getting worse. My scoliosis made my hips so off-balance that it affected my legs. I was also given a lift to wear in my shoe because my left leg was about an inch shorter than my right leg. I was supposed to wear the brace at least 18 hours a day, but I usually wore it for about 23 hours a day. I ended up wearing the brace […]

Speak Now for Kids- Family Advocacy Day

Nemours Children’s Health is proud to participate in the 2022 Children’s Hospital Association’s (CHA) Speak Now for Kids’ Family Advocacy Day. This annual event brings together pediatric patients, their families and the children’s hospitals that care for them to speak with our Congressional leaders about the unique needs of children and how children’s hospitals play a critical role in providing coordinated, specialized care for our youngest generation. This year, we are excited to bring two young champions and their families to meet virtually with our Delaware and Florida Congressional delegation members to share their inspiring stories.   David Smith*, 12 years old, Wilmington DE David started exhibiting challenging behavior at age 5. These behavioral issues became more intense over time. While he was excelling academically, he experienced strong emotional outbursts at school, which led to many trips to the principal’s office. In the beginning, school administrators believed he would outgrow […]

A Fighting Spirit- Emilee’s Story of Heart and Spine

If resilience had a name, it would be that of 12-year-old Emilee. She was born with a complex heart defect called single ventricle that required heart surgery when she was just 2 days old. Her fighting spirit endured through three more heart surgeries and several heart catheterizations. Her heart surgeon, Dr. Christian Pizarro, assisted by cardiac anesthesiologist, Dr. Ellen Spurrier, and their highly specialized team—cared for her–watching over Emilee day and night. It was a scary and unsettling time for her family, who stayed right by her side. Through it all, Emilee thrived. But her health challenges continued.  Emilee was diagnosed with scoliosis that progressed to the point that surgery was needed.  In January 2022, she underwent a spinal fusion, a major surgery for anyone, but especially risky for someone with a single ventricle heart defect. Pediatric spine surgeon, Dr. Peter Gabos, performed the complicated operation with Dr. Spurrier again […]

The Star Wars Cardiac Jedi- Vincent’s Story

Contributed by Vincent’s mom Tamara. When my father died of a heart attack at the age of 39, I was only 4 years old. It was very hard on me and I always feared that I would have a heart problem or my kids would have one. Our pediatrician recommended that both my son and daughter be seen by a cardiologist to be sure that their hearts were healthy. She asked that I get my children cleared by the cardiologist, so of course; I called Nemours Children’s Health, since we’ve had previous appointments there. My daughter and son both had an EKG;  Dr. Steven Ritz, our Nemours pediatric cardiologist, said that something showed up on Vincent’s EKG and that he would need to have an ultrasound. Dr. Ritz went over his findings in detail with us. Vincent was diagnosed with Wolff-Parkinson-White (WPW) Syndrome, a condition in which he has an extra electrical […]

Patient surrounded by her care team

The Beat Goes On: Grace, a Heart Patient, Shares Her Story

Back in February of 2016, I started experiencing horrible palpitations, and decided one day to go get it to check out. I was immediately diagnosed with (WPW) -Wolff-Parkinson-White syndrome. After my first heart ablation, everything went smoothly. I was back to doing all the sports I loved like track and cheer! I was living life to the fullest. However, a couple of months later, I started to have the same palpitations, along with being super tired and getting dizzy. The doctor I originally went to had moved away, so my mom who is a nurse, did her research, and we decided to switch over to Nemours Children’s Health.  Seeing a cardiologist there, I had my second heart ablation in December 2016. I was 14 years old and have had two heart ablations! The surgery was quick, and I was told that everything looked good, they said. I recovered perfectly and […]

Dancing Perfection- Samantha’s Spine Story

During a routine scoliosis check in school, Samantha received some alarming news. She was diagnosed with scoliosis and her spine had grown into an S shape. After meeting with multiple doctors and specialists, Samantha’s family decided to come to Nemours Children’s Hospital, Delaware to meet with Dr. Suken Shah, pediatric orthopedic surgeon. Due to the severity of the curve, Dr. Shah determined that a posterior spinal fusion was needed to correct her spine and prevent pain and disability in later life. Samantha was nervous but determined. She continued dancing, her passion, up until the day of her surgery. Her determination continued as she was able to stand within hours of her surgery, and walked the hospital halls the next day thanks to excellent pain management and the Nemours rapid recovery pathway.  She was also thrilled to learn she had grown a couple of Inches! Not sure she would ever dance again, Samantha […]

A Damaged Liver that Led to a Liver Transplant- Jeylainie’s Story

Jeylainie’s life as a normal 9-year-old changed abruptly in September 2021. Her mother, Keyla, noticed that Jeylainie’s skin was turning yellow and becoming jaundiced. Soon after, Jeylainie started complaining of a stomachache that would not stop. Her mother took her to a local children’s hospital, where she was admitted. Her doctors initially thought she had kidney stones, then did a biopsy to determine what was wrong. But Jeylainie’s health continued to deteriorate rapidly. After her doctors spoke with Nemours Children’s Solid Organ Transplant team, Jeylainie was transferred to Nemours Children’s Hospital, Delaware for more specialized care. Jeylainie’s diagnosis was hepatitis, an acute inflammation that causes damage like scarring to the liver. Since her liver was so damaged, she needed a liver transplant quickly. Keyla says, “It was crazy – Jeylainie is a healthy eater who loves her veggies, it was surprising to see her health go downhill so quickly.” While […]

An International Search of Hope- Maria’s Story

Contributed by Maria’s dad Shahid. When Maria was 10 months old, we noticed some abnormalities in her chest and back, but we weren’t able to find a hospital or doctor who understood her situation.  She was frequently ill with pneumonia and breathing was painful. Her condition eventually worsened.   When she was 18 months old, we met a doctor in Peshawar, Pakistan who diagnosed Maria with MPS. It was our first time hearing the word MPS (Mucopolysaccharidosis), so we did online research and reached out to other families. Unfortunately, there is no treatment for rare diseases in Pakistan and there was no family to guide us for diagnosis and treatment. I sent Maria’s bio-samples to India, and Germany where they confirmed that she had MPS, but they were unable to determine her type of MPS. So, I sent her samples to the US and a diagnosis with MPS IV was […]

Achieving Milestones with a Disability- Emily’s Cerebral Palsy Journey

Contributed by Emily’s mom Elizabeth. Emily is an AMAZING little girl! At 5-years-old, she is comfortable telling people she has a disability and that her muscles work differently than theirs do. Emily was born three months early and diagnosed with cerebral palsy when she was about a year and a half old. Both Emily and her identical twin sister, Sarah, were delayed in reaching their milestones, but Emily’s delays were more pronounced.  Emily is super determined and does everything she can to keep up with her peers. This requires A LOT of hard work! Emily does about 6-7 hours of therapy a week, a combination of PT, OT, and aqua therapy. Since she was about 3, Emily has received intermittent Botox injections to loosen her muscles and give her some additional flexibility and mobility. For example, she learned to walk with lofstrand crutches within 6 months, a task they rarely teach children her age given […]

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 […]

Page 26 of 31

Page 26 of 31

Page 26 of 31