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Nemours

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 […]

Like many expectant parents, Arlo’s parents couldn’t wait to find out the sex of their baby. When Carlie was 12 weeks pregnant, they opted to get NIPT bloodwork done to find out as soon as possible. When their blood screening came back, Arlo’s parents were surprised to find out that their baby boy had a 98% chance of having Down Syndrome. “Of course, we were shocked,” says Carlie, “But knowing about our baby’s condition only helped solidify the fact that he was so wanted and so loved—extra chromosome and all.” “From the moment we got the phone call with our diagnosis, through the rest of my pregnancy and now, we have been beyond blessed with amazing doctors, nurses, and therapists,” says Carlie. “The Down Syndrome Clinic at Nemours has been a beautiful addition to Arlo’s village. We feel like they are truly there for us, not as just another patient, […]

When Aila was just 2 years old, her parents started to notice that something was off. Each time Aila tried to walk, she was always holding onto something. She seemed to struggle when she wasn’t gripping her toy stroller. After going to see a local physical therapist, Aila’s family found out that she had SMA. SMA, or spinal muscular atrophy, is a genetic disorder that can affect your muscles, nerve cells, and spinal cord. People with SMA may experience a decline in strength and limited mobility. As Aila grew older, she had to use a wheelchair. She discovered that she could not complete tasks, like basic hygiene actions, on her own and frequently needed assistance. When she was about 7 years old, Aila began seeing doctors at Nemours Children’s Hospital, Florida. Her family was making 6-hour drives for Aila to be treated at Nemours Children’s. After countless hours of research […]

While Hudson’s parents were out of town, his grandmother noticed that something seemed a bit off with his ankle. She thought it looked funny, bigger. When his grandfather agreed, and also expressed concern about his ankle, they immediately booked a doctors’ appointment for Hudson when his parents returned home. “I took him in thinking, ‘I don’t know what’s going on,’” says Hudson’s mom, Elizabeth. “He hasn’t complained about anything, doesn’t have any pain, he thinks he’s fine. But, let’s go get his ankle checked, just to rule anything out.” That’s when they first met pediatric orthopedic surgeon Dr. Joseph Khoury at Nemours Children’s Health, Lakeland. After his first examination, Dr. Khoury explained to them that Hudson had flat feet. This didn’t come as a surprise to Elizabeth as her husband also has flat feet. “He then went on to do an X-ray,” says Elizabeth. “He looked at the results and Dr. […]

After years of searching for answers, Katelyn finally receives a diagnosis at Nemours Children’s Health with lymphangiectasia, a rare condition causing protein loss

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 […]