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Patient Stories

After Troy was born, he was struggling to breathe. His mother Holli alerted the labor and delivery nurses, and they responded by checking his pulse, noticing that it was abnormal. Holli’s life was turned upside down when she was told that Troy had to be transferred out of state from Cape May, NJ to Nemours Children’s Hospital in Wilmington, Delaware to get the care that he would need. He was born with an interrupted aortic arch, a rare congenital heart defect that happens when the aorta doesn’t form completely. At just 6 days old, and due to his small size, Troy had a procedure to place bands around his pulmonary arteries and a stent the ductus arteriosus, to control the excessive amount of blood going to his lungs and to provide circulation to the lower body, performed by pediatric cardiac surgeon, Dr. Christian Pizarro. Then, at 6 months old, Dr. […]

Kaii was diagnosed with a serious congenital heart defect while still in the womb. With the help of experts at Nemours Children’s Hospital in Delaware, Kaii is healthy and meeting his developmental milestones

While performing a vault in her gymnastics competition, 14-year-old Saylor suffered a serious injury that would flip her world upside down. After completing the vault, Saylor’s ankle was immediately hurt, and she was unable to place any weight on it. With another gymnastics competition quickly approaching, Saylor sought medical attention straight away.  She visited numerous doctors and underwent several MRIs with no progress. During this time, the pain Saylor was experiencing in her foot began to spread to her leg and back. After visiting a local neurologist, Saylor was determined to have Chronic Regional Pain Syndrome (excess and prolonged pain and inflammation that follows an injury). It was then that Saylor was referred to Dr. Santana-Rojas at Nemours Children’s Health. After evaluation from Dr. Santana-Rojas and her team, it was determined that Saylor also had a severe case of Functional Neurologic Disorder. “Functional Neurological Disorder had completely removed me from […]

After dating for ten years and recently married, Brandi and Brian Jones were ready to have children. They had always dreamed of having twins – hoping for a “one and done” pregnancy – although multiples were not part of their family history. Both knew it wouldn’t be easy.  Brandi had been diagnosed with polycystic ovarian syndrome (PCOS) which could make it challenging to get pregnant. Even with the diagnosis of PCOS, they prayed not only to get pregnant but to get pregnant with twins. To assess her fertility, Brandi’s OB suggested she get an ovulation test. No one was more surprised than Brandi herself when the test revealed her ovulation levels were off the charts.  Her OB confirmed she was pregnant with one baby. The couple was elated that God had answered their prayers. They soon began regular visits with their OB. At a routine ultrasound, two weeks later, Brian and […]

During her senior season of high school wresting, Kate felt something was off. When Kate’s right shoulder dislocated from her socket during a wrestling practice, pain started to occur. Kate dismissed it at first but soon, this pain became persistent during every practice and started to impact her everyday life.  Her shoulder constantly dislocated while out on the mat and it held her back from taking good shots against opponents. Kate continued to persist through the pain until she could no longer reach for something or close a car door without discomfort. “When I walked through the halls at school, I felt my shoulder being separated from the socket. It felt loose – that’s the only way I can describe it. It is a scary feeling when you know that your arm is not properly attached to your body, let alone wrestling with it,” says Kate. This injury had a […]

Brooke Renton’s life changed substantially when her daughter, Olivia, was born in March 2021, both in the physical sense (the family permanently relocated from Tallahassee to an Orlando suburb to be closer to Nemours Children’s Hospital, Florida) and in the emotional sense when she knew she would do anything for her sweet baby girl.   Born with a rare chromosomal condition called Trisomy 18 at a hospital in Tallahassee, Olivia had to be on a ventilator for the first 11 days of her life. The day before she was supposed to go home, doctors had to perform lifesaving CPR and place Olivia back on a ventilator. Olivia’s heart was “pouring blood into her lungs” due to a hole in her heart known as a ventricular septal defect. NICU doctors in Tallahassee told the family that Olivia would need a specialized center that performed advanced pediatric heart surgery to correct the issue. Due […]