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, […]

Marcella was born prematurely at another hospital in May of 2023. She had a fairly uneventful first month, until she developed Necrotizing Enterocolitis at 4 weeks. She had her feeds stopped, was put on the ventilator because her stomach was so swollen it was affecting her breathing, and IV antibiotics were started. But the disease had already progressed too far, and she continued to go downhill fast. Two days after the diagnosis she was transferred to the Nemours Children’s Hospital, Delaware NICU, and the following afternoon she had her first exploratory laparotomy. Things were looking very bleak after this first surgery. Her intestines were put into a silo, basically a clear bag that held them outside of her body so doctors could visualize what the tissue looked like. Based on what they saw, it was very likely that she would not survive as all the tissue appeared to be dead. That […]

The day before we were admitted to Nemours Children’s Hospital, Florida, my daughter, Aurelia, had had a bit of a cough, a fever, and was vomiting. I took her to two different urgent cares, and they both told us it was just a virus, and she was fine. That night I slept in the bed with her because I was concerned about her fever.  In the middle of the night, she started having trouble breathing and her lips turned blue. We took her to the emergency room and she was transferred to Nemours Children’s. There, she was diagnosed with septic shock, pneumonia, and heart failure due to strep and human metapneumovirus. She was put on a ventilator but she still wasn’t getting enough oxygen, so she was put on ECMO to see if that would give her heart and lungs time to heal. An ECMO machine is similar to a heart-lung by-pass machine used in […]