Patient Stories Archives - Nemours Blog

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Patient Stories

Epilepsy Awareness Month- Chloe M’s Story (Mother’s Words)

On May 30th, 2021, Chloe was having a typical night playing with her toys. She was smiling and giggling like always, and suddenly she stopped her energetic pacing between toys and randomly fell to the floor. She became limp and stopped breathing. Her lips and feet turned purple right before she became conscious again. No one knew why this happened because she’d never experienced anything like it before. An ambulance arrived, and Chloe was taken to Nemours, where she was diagnosed with epilepsy following a second episode that occurred in the hospital. Despite a quick diagnosis, there was still a long road ahead to gain seizure control. Chloe’s days went from cheerful playing and adventures to constant seizures, which made her feel sick and exhausted. She was unmotivated to do anything. Her toys were barely touched, and she couldn’t sleep through the night without multiple seizures. Eating food became a […]

Palliative Care Month – Molly’s Story (Mother’s Words)

On her first day of kindergarten on September 20, 2010, Molly Katherine Dunne was a seemingly healthy girl until she collapsed as she arrived at school. She was taken to Nemours by ambulance. After some testing, she went home with plans to follow up on an out-patient basis. However, the next night her condition worsened so we returned to Nemours where she was admitted. After many tests, Molly was diagnosed with Pulmonary Hypertension. Things happened quickly and we knew little of what this diagnosis meant. Molly underwent a cardiac catheterization to help determine a treatment plan and next steps. While in the catheterization lab, she had some complications followed by a cardiac arrest. She was revived but was not stable so she was placed on ECMO also known as heart-lung bypass. Over the next few days, attempts to wean from ECMO were unsuccessful. Molly was transferred to another children’s hospital […]

Nationals or Bust — Edris’s Story (In His Own Words)

Gymnastics is my LIFE! I didn’t realize how much gymnastics meant to me until it was taken away. I’ve been competing since I was 7 years old and played many sports until my mother noticed me doing backflips around the house and signed me up for gymnastics. From my first class, I knew gymnastics was the sport for me. I competed at every level, gaining new skills every year. I stayed healthy for 10 years, until November 3, 2020, when I thought my gymnastics career was over. On the floor, I did a layout of a skill I had mastered years ago, but when I landed, I dislocated my knee.  Once the swelling subsided, I was told that I needed medial patellofemoral ligament and tibial tubercle osteotomy surgery. I was scheduled for surgery six weeks later, but contracted COVID and pushed the surgery back. Once I had surgery, I started […]

Myah the Fighter

Myah has been a fighter since the day she was born. If two parents each have their own form of skeletal dysplasia, it is possible for their child to inherit both types. This was the case for lovely Myah who carries a diagnosis of both achondroplasia and Kniest dysplasia. Given her complex medical needs, at 5 months of age her parents transferred her inpatient care across the country to Delaware to receive guidance from the Nemours skeletal dysplasia team.  She required coordinated multidisciplinary care from multiple specialists over her months-long hospital stay, which was possible given the specialized expertise of Nemours providers. Nemours offers care to individuals with skeletal dysplasia until the age of 35, so during Myah’s admission, her parents Brian and Alana also received multidisciplinary evaluations with the Nemours skeletal dysplasia team.  We cannot wait to see what the future holds for Myah and her family, and will be here to support them along the […]

Little League Elbow – Michael’s Story

My name is Michael Shucoski. I’m 12 years old and am starting the 7th grade. I really love baseball and my favorite positions are pitcher and first base. This past spring, I developed a sharp pain in my elbow that would not go away. It was very irritating, and I couldn’t even throw the ball without pain.   My mom took me to Nemours Children’s Health, Deptford for treatment, where I met Dr. William Emanuele (Dr. Bill), a sports medicine specialist. After he performed tests and took x-rays, my diagnosis was medial elbow apophysitis, otherwise known as “little league elbow.” It’s an inflammation of the growth plate that occurs in young baseball players from the constant throwing motion. It’s fairly common in pitchers like myself. The treatment was a rehab program consisting of targeted strengthening and stretches as well as six weeks of rest, which meant no throwing, but for me, […]

ADP Celebrates 100th Delivery

Nemours’ Advance Delivery Program is designed for healthy moms-to-be whose babies will need complex care from the moment they’re born.

A Tale of Two Roccos- Father & Son Kidney Transplant

Rocco started his freshman year in September 2021, excited to be in high school and ready for a new school year. Two weeks into the school year, Rocco and his family went to their favorite skate park. Rocco fell off his skateboard and injured his leg. His parents took him to the emergency room, where they found out he fractured his right ankle. During his workup in the emergency room, the care team noticed that Rocco’s blood pressure was high. Stacey, Rocco’s mom, initially did not think much of it, considering he had just broken his ankle. But the ER nurse was very insistent that they make a follow up appointment with Rocco’s pediatrician. Stacey took note and monitored Rocco’s blood pressure over the next few days. When Rocco’s blood pressure did not return to normal, Stacey immediately made an appointment with their pediatrician. At the pediatrician’s office, Stacey made […]

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 […]

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