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Patient Stories

Quinn’s Scoliosis Journey

“We are so happy with Dr. Khoury and what he’s been able to do for our son. He is an amazing doctor. He always treats everyone with respect. We are excited to continue our scoliosis journey with Dr. Khoury and Nemours.” –Mom to Quinn (age 4) Quinn’s mom first noticed something was wrong with his back when he was just 2 months old. “I could feel a bump on one side of his back,” she explains. “I thought it was lack of muscle tone…I didn’t know that what I was feeling was the rib hump.” When she mentioned this to Quinn’s pediatrician, she diagnosed him with torticollis and Quinn began doing physical therapy. His torticollis eventually got better, but mom knew there was still something wrong with his back. That was because Quinn didn’t sit on his own until around 8 months, and he didn’t crawl until after 9 months. […]

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 […]

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 […]

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 […]

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 […]

CHA Family Advocacy Week

Family Advocacy Week: Nemours Patients Share Their Stories

This past year and a half has been tough on all of us, especially our children and youth. For so many, the COVID-19 pandemic has changed life as we know it. But for Nemours patients Kate and Sebastian, the pandemic is just one of many life-changing events they’ve faced. And that’s why they are both sharing their medical journeys to members of Congress during the 2021 Children’s Hospital Association (CHA) “Speak Now for Kids’ Family Advocacy Week,” to increase awareness about the ongoing and essential care provided by children’s hospitals. Kate’s Story When she was just 2 years old, Kate McKinery was diagnosed with optic pathway glioma, a brain tumor that interferes with her optic nerve and impacts her sight. The tumor also causes hormone deficiencies, resulting in abnormal liver function, type 2 diabetes and a full height potential of around 4’2. Kate has undergone multiple procedures, tests and appointments […]

The bridge to a brighter future

The bridge to a brighter future

When Erin Pitts faced spinal surgery as a teen, she never imagined it would impact her life in other ways. Diagnosed with scoliosis at a young age, initially the care plan for the Jacksonville, Fla., resident was to pursue a non-surgical approach to correct the curves in her spine using a back brace. When her complex scoliosis proved resistant to treatment, however, surgery became the best option for long-term results. The experience ended up changing not only her health, but also her career trajectory. Pitts first learned of her condition in the sixth grade, when she began experiencing intense lower back pain. As her condition gradually began limiting her daily activities, her mom made an appointment with her pediatrician. He referred her to Nemours for an orthopedic assessment, where she became a patient of Eric Loveless, MD, department chair of orthopedics at Nemours and a board-certified pediatric surgeon who performs […]

Precision Medicine Saves Lives: One Family’s Story | Promise: Powered by Nemours Children's Health System

Precision Medicine Saves Lives: One Family’s Story

When one-year-old Piper’s body began to swell one afternoon, her parents thought she was having an allergic reaction. They had no idea that they were about to embark on a journey of rare illness, complex treatments, and advocacy for children’s health. Piper’s parents, Erin and Chris Lee, took their daughter to her pediatrician, expecting a quick diagnosis and an easy solution. But Piper wasn’t allergic to anything. Instead, they learned her kidneys were failing; Piper would have to be admitted to Nemours/Alfred I. duPont Hospital for Children immediately. There, pediatric nephrologists proposed genetic testing for Piper. That’s because, although it was clear that Piper’s kidney function was declining, the cause of her decline wasn’t so obvious. In order to proceed with the best treatment for Piper, her doctors needed to know just what kind of kidney disease they were dealing with. They needed the help of precision medicine, a newer […]

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