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Patient Stories

When Courtney was pregnant with her son Brendan, her physician noticed something was off. During an ultrasound, they discovered that Brendan had an enlarged bowel, which can be a sign of cystic fibrosis. When Brendan was born in November of 2022, he was immediately placed in the NICU. “This was already planned and why we delivered in the Advanced Delivery Unit at Nemours Children’s Hospital,” explains Courtney. “The team was remarkable. Dr. Chou and our nurse, Mo, made a nerve-racking delivery as easy and seamless as possible. It was nothing but a great experience, considering the circumstances.” At only a day and a half old, Brendan had surgery. “During the surgery, they found that a part of the bowel had twisted on itself, causing it to not function properly,” says Courtney. “That day, they removed 30 cm of bowel and started the use of a colostomy bag. Then we had a 6-week healing […]

When Gaby was four years old, her family noticed that she was barely talking, was frequently losing her balance, and experiencing severe migraines. After going through many tests, including a sleep study, they found out that she had Chiari malformation. As Gaby continued to grow, her doctors uncovered more diagnoses including scoliosis, postural orthostatic tachycardia syndrome (POTS), Tethered Cord, Syringomyelia, secondary Hydrocephalus PTSD, among many others. Gaby was seeing a plethora of doctors and undergoing several different therapies, surgeries, and medications. However, her family was having difficulty finding doctors that specialized in Gaby’s conditions in Tampa. After doing some research, Gaby’s mom, Diana, found Nemours Children’s Hospital, Florida. Their first visit at Nemours Children’s was with the neurology team in Orlando when Gaby was about nine years old. “As a parent who has dealt with so many doctors, I have experienced doctors who don’t even know how to pronounce her […]

Experience the remarkable journey of Jeremiah, a baby with a rare genetic disorder, as his family finds hope and the best care at Nemours Children’s Hospital.

Abigail is a 16-year-old girl who was diagnosed with scoliosis when she was in middle school. It was during her annual health visit when her spine caught the doctor’s attention. Abigail’s mother, Serena, took her daughter to see an orthopedic specialist at Nemours Children’s Health, Jacksonville, where they met with Dr. Kevin Neal and were told that Abigail had scoliosis. Initially, no further actions were taken as the scoliosis wasn’t severe. However, about a year had passed when Abigail started experiencing more pain and her posture worsened. So, they went back to Dr. Neal at Nemours Children’s and Abigail was put into a TLSO brace.  The care team at Nemours played a vital role in Abigail’s treatment. “Mike, in particular, was fabulous,” says Serena. Michael Wright, Director of Prosthetics & Orthotics, ordered and fitted Abigail’s scoliosis brace. “He played his role perfectly, giving Abigail a sense of comfort throughout the […]

When Riley was born, she was diagnosed with a rare bone dysplasia that made her bones irregular in size and shape. As she grew, the dysplasia began to manifest itself in her spine, and she was diagnosed with congenital kyphoscoliosis at just one year old. For the next five years, Riley saw a specialist in Massachusetts and had to wear a brace for over 18 hours a day for six years. When Riley’s family moved to Pennsylvania for a new opportunity, they were referred to the amazing team at Nemours Children’s Hospital, Delaware. There, they met with Dr. William Mackenzie, who continued to provide Riley with the best care possible. As time went on, she had to undergo several casts, and implantation of magnetically controlled growing rods. This surgery, a complex procedure performed by both Dr Mackenzie and Dr. Suken Shah, pediatric orthopedic spinal surgeon, was successful to maintain the […]

When Riley’s father noticed a slight curvature in her spine, they decided to have it checked by a doctor. They headed to Nemours Children’s Health, Jacksonville where Dr. Neal diagnosed Riley with scoliosis in the summer of 2015. Scoliosis is a medical condition in which a sideways curvature is found in the spine, causing issues such as back problems and discomfort. When Riley was diagnosed with scoliosis at age 12, her spine curvature was about 25 degrees. Riley went through periods of wearing braces to try and correct the curvature. Unfortunately, the braces weren’t producing the results she had hoped. As she got older, the curvature continued to worsen to about 50 degrees. When she was 14, Riley decided to stop treatment and wait for spinal fusion surgery until she felt ready. By age 18, Riley’s pain grew stronger, and she decided it might be time for the surgery. Riley […]