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Nemours Children’s Health, Delaware Valley

Finally Home and All Together: Brendan’s Story

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 […]

Slopes and Waves: Natalie’s Journey to Overcoming Scoliosis

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 […]

Riley’s Scoliosis Journey

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 […]

Cystic Fibrosis Awareness Month: Madelynn’s Story

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 […]

Delivering a Miracle – Mercy’s Story

Mercy was diagnosed with a giant omphalocele and pulmonary hypertension, received exceptional care from the medical team at Nemours Children’s Hospital, made her parents feel comfortable and provided attention from every department that cared for them.

Music to My Ears: Atharv’s OI Journey

Atharv was diagnosed with osteogenesis imperfecta (OI), whose journey of resilience and determination has been made possible with the help of multidisciplinary care team at Nemours Children’s Hospital.

Heart of a Warrior – Troy’s Story

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. […]

Nothing If Not Resilient – Kate’s Story

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 […]

Just Keep Dancing — Summer’s Story

Tammy noticed her daughter’s size difference from a young age. Summer was consistently smaller than her peers growing up, but her parents and pediatrician never suspected a serious issue. When Summer was about 7 years old, the family took a trip to Disney. Unlike their previous vacations, Tammy and Erik realized that Summer was struggling to keep up. This behavior was concerning because it was not the norm for their bubbly, energetic daughter. Unfortunately, Summer’s limp worsened, she experienced immense stiffness and hip pain, and she struggled to do what she loves most: dance. After an attempt at physical therapy, many x-rays and testing, Summer was diagnosed with Multiple Epiphyseal Dysplasia (MED) in August 2020. MED is a rare genetic disorder that effects the development of the joints in the legs. Her doctors recommended Nemours Children’s Hospital, Delaware to see orthopedic surgeon Dr. Will Mackenzie and orthogeneticist Dr. Mike Bober. […]

Raymond’s Story (In Mom’s Words)

My name is Alex Gaudlap. Also known as Raymond’s mom. Our journey with Nemours Children’s Health started in the fall of 2017 when we relocated back to New Jersey from Camp Lejeune, North Carolina due to Raymond not hitting developmental milestones appropriately. The doctors down South assured me Raymond was fine, but my motherly instinct told me he wasn’t. From the moment we stepped foot into Nemours Children’s, I felt like our concerns were listened to. Raymond’s first appointment at Nemours was with a neurologist in the Deptford location. Since we were new patients and basically starting from the beginning with tests, she ordered a routine EEG. We never would have thought that his first test would give us answers, but it did. Raymond was diagnosed with a rare form of epilepsy; that gave us some indication to why he had a global developmental delay. After receiving the epilepsy diagnosis, […]

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Page 9 of 10

Page 9 of 10