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Nemours Children’s Hospital

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 […]

Natalie had always been an active teenager with a love for surfing, skiing, and running. She would often spend her weekends hitting the slopes or catching waves at the beach with her friends. Determined, Natalie worked hard to become the best athlete she could to achieve her goals. However, during a routine check-up at her pediatrician’s office, Natalie received some unexpected news. She had adolescent idiopathic scoliosis, a condition that causes the spine to curve. Her pediatrician referred her to Nemours Children’s Hospital, Delaware to meet with Dr. Suken Shah, a pediatric orthopedic surgeon. Despite the busy nature of the hospital, Natalie was treated with kindness, patience, and respect. Dr. Shah took the time to talk with her and understand her as a person, not just a patient with a medical condition. He mapped out a care plan for her scoliosis to get her back to her active lifestyle. At […]

Meet these Nemours Children’s patients from Orlando and Delaware with life-threatening diagnoses. Together with their families and the Nemours Federal Affairs Team, our young advocates will meet with members of Congress in Washington, D.C.

Madelynn was 7 days old when the pediatrician called her mom, Rebekah, around 6pm in the evening (never a good sign). Rebekah knew right away that something was amiss. The pediatrician mentioned cystic fibrosis and said they should do some testing on baby Madelynn. She was 14 days old when she went for her first sweat test. Rebekah was petrified holding her newborn while electromagnetic currents were taped on Madelynn’s arm. Then, they had to sit in a hot room, hoping for Madelynn to produce enough sweat to test for sodium chloride levels. The waiting was awful. Early the next morning, they received a call from the pediatrician, stating they had a 3pm appointment with the pulmonologist. This is when Madelynn’s journey with CF began. When Madelynn was 7 years old, her family found out that one of her original CF doctors was retiring. Additionally, her family had recently moved to […]

At the young age of 15, Kalianne never expected to receive the challenging diagnosis of multiple sclerosis. Overnight, her world changed. When Kalianne woke up sweating with chills and couldn’t feel the right side of her face or body, her dad immediately took her to the local ER. Kalianne was so nervous to be heading to the hospital, she got sick in the car on the way there. Once they arrived, Kalianne was whisked away for blood tests and a CT scan. After looking at her test results, the ER staff concluded that Kalianne was having severe headaches, which was causing the vomiting and other symptoms and then they sent her home. A few days had gone by, and Kalianne’s symptoms continued to worsen. She was experiencing numbness in her face and tongue, her limbs felt heavy, and she was losing the ability to write clearly. After researching her symptoms […]

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