Guest Contributor, Author at Nemours Blog

FEATURED POST

It’s a Small World – Baby Lorenzo’s Story

At mom’s 20-week ultrasound, doctors discovered that baby Lorenzo had a cleft lip, creating anxiety for his expecting parents. “We didn’t know what to expect from the diagnosis, were scared of the unknown, and afraid our son would struggle with feeding,” said Lorenzo’s mom, Eneily. The Center for Fetal Care and the Division of Plastic and Craniofacial Surgery at Nemours Children’s Hospital, Florida worked together to comfort and reassure Lorenzo’s family. “Our experience with Nemours has been a true blessing to us. They took us by our hands and guided us,” said Eneily. “The care we received since we met Dr. Taboada, our Maternal Fetal Medicine specialist, has been excellent, and we were treated with love, patience, and respect. During each visit, Dr. Taboada would reassure us, saying, ‘Your son is perfect, and you will love his smile.’ She was right. I loved his first smile so much, and I love his […]

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Aiden’s Story (Mother’s Words)

One evening shortly before Aiden’s 7th birthday, his father noticed Aiden was unable to speak, drooling, and had a facial droop with left sided weakness. I was working as a pediatric nurse at a community hospital, where he brought Aiden. We thought he was having a stroke. He was transferred to the Emergency Department at Nemours Children’s Hospital, Delaware, where he had a full work up and was diagnosed with epilepsy and started on medications within 24 hours of arrival. Aiden tells us he had several episodes before anyone saw him and was very scared. Fortunately, we don’t think he had many seizures before treatment. It still impacted his life, unfortunately limiting some of his activities, however he is definitely coming into his own and doing so well. He even wants to go into the medical field to be a surgeon. Epilepsy and the resulting seizures were a frequent part […]

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A Holiday Poem from Telehealth

Twas weeks before winter and all through the town,Not a child seemed well, lots of kiddos feeling down. But the telehealth team, with their cameras and gear,Settled in for long days to ensure they got care.Care was given with quality, Dr. Schare would approve,And documented appropriately a Dr. Ho- Epic move.Dr. Josephson chronicled these effort and learnings, in Telemedicine and E-Health, In hopes it would help those interested by sharing the wealthOf knowledge gained through this innovate work.And Dr. Ali made sure the residents, and medical students got to share in this perk,Of All that we’ve learned over this and past years, An endeavor to teach them, telemedicine was nothing to fear.Word spread through the town and new doctors they came,Dr. Cheng, Dr. Romero, Dr. Cato, Dr. Kernen, by name.And as the sickness, it spread, a little tired we grew, but we knew they were counting on us all, Drs. Chalom, Karch, Barajas, Walker, […]

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Epilepsy Awareness – Chloe P’s Story

Meet Chloe. Chloe was diagnosed with Epilepsy as an infant after experiencing chronic seizures. Prior to receiving treatment at Nemours Children’s Health, Chloe found it difficult to participate in daily tasks such as school or social activities. “Stomach pains, shaking and an inability to focus were just a few things that would happen to me daily,” Chloe shares. With the expert care provided by our neurology team, Chloe was able to gain a better understanding of her condition, symptoms and began to navigate life, discovering her own path. “It is still sometimes surreal to know that I am less limited when it comes to having to do what someone would consider ‘normal.’ Go to school, be away on a vacation, go out shopping or just not have the constant worry of when and where a seizure may happen.” These days, Chloe is looking forward to her bright future as she […]

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Epilepsy Awareness Month- Chloe M’s Story (Mother’s Words)

On May 30th, 2021, Chloe was having a typical night playing with her toys. She was smiling and giggling like always, and suddenly she stopped her energetic pacing between toys and randomly fell to the floor. She became limp and stopped breathing. Her lips and feet turned purple right before she became conscious again. No one knew why this happened because she’d never experienced anything like it before. An ambulance arrived, and Chloe was taken to Nemours, where she was diagnosed with epilepsy following a second episode that occurred in the hospital. Despite a quick diagnosis, there was still a long road ahead to gain seizure control. Chloe’s days went from cheerful playing and adventures to constant seizures, which made her feel sick and exhausted. She was unmotivated to do anything. Her toys were barely touched, and she couldn’t sleep through the night without multiple seizures. Eating food became a […]

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Palliative Care Month – Molly’s Story (Mother’s Words)

On her first day of kindergarten on September 20, 2010, Molly Katherine Dunne was a seemingly healthy girl until she collapsed as she arrived at school. She was taken to Nemours by ambulance. After some testing, she went home with plans to follow up on an out-patient basis. However, the next night her condition worsened so we returned to Nemours where she was admitted. After many tests, Molly was diagnosed with Pulmonary Hypertension. Things happened quickly and we knew little of what this diagnosis meant. Molly underwent a cardiac catheterization to help determine a treatment plan and next steps. While in the catheterization lab, she had some complications followed by a cardiac arrest. She was revived but was not stable so she was placed on ECMO also known as heart-lung bypass. Over the next few days, attempts to wean from ECMO were unsuccessful. Molly was transferred to another children’s hospital […]

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Microtia Awareness Day — Axel’s Story

You’d never know it today, but 10-year-old Axel was born with an absent right ear, which was noticed at birth. His condition is defined as microtia, and refers to a missing or an abnormal ear, and can involve one or both ears. Newborn hearing tests revealed that, besides missing his outer ear, Axel did not have a normal hearing ability on the right side. Fortunately, Axel didn’t have any other medical conditions that required early treatment. As he grew up, it became increasingly hard to deal with the appearance of having a missing ear. “Sometimes kids at school would bully him for not having a full ear,” says his mother, Juana. “It made him feel like he wasn’t a normal kid.” In addition to being seen by Nemours Children’s Audiology and Otolaryngology teams, Axel was referred to Plastic Surgery to discuss options for treating his ear difference. A staged ear […]

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Nationals or Bust — Edris’s Story (In His Own Words)

Gymnastics is my LIFE! I didn’t realize how much gymnastics meant to me until it was taken away. I’ve been competing since I was 7 years old and played many sports until my mother noticed me doing backflips around the house and signed me up for gymnastics. From my first class, I knew gymnastics was the sport for me. I competed at every level, gaining new skills every year. I stayed healthy for 10 years, until November 3, 2020, when I thought my gymnastics career was over. On the floor, I did a layout of a skill I had mastered years ago, but when I landed, I dislocated my knee. Once the swelling subsided, I was told that I needed medial patellofemoral ligament and tibial tubercle osteotomy surgery. I was scheduled for surgery six weeks later, but contracted COVID and pushed the surgery back. Once I had surgery, I started […]

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Getting back to Champion Level Caliber — Ryan’s Story

Ryan has been a gymnast for 10 years, growing into a top competitor on her team. When she suffered a dislocated shoulder and instability injury, she met Dr. Alvin Su, sports orthopedic surgeon at Nemours Children’s Health, Deptford. She had instability in both of her shoulders, and the right shoulder bothered her more in the beginning. Dr. Su first fixed Ryan’s right shoulder with surgery in 2019. Ryan completed physical therapy and was able to return to gymnastics. To help Ryan reach her full potential, Dr. Su subsequently fixed her left shoulder in 2021. Over time, Dr. Su helped her reach champion-level caliber once again to bring home the gold. Ryan completed her physical therapy sessions and before being released, her therapist let her go back into the gym. She’s doing great now; both shoulders are healed, and she is a world, state, and regional champ! Ryan loves school, cooking, […]

SERVICES & SPECIALTIES

Myah the Fighter

Myah has been a fighter since the day she was born. If two parents each have their own form of skeletal dysplasia, it is possible for their child to inherit both types. This was the case for lovely Myah who carries a diagnosis of both achondroplasia and Kniest dysplasia. Given her complex medical needs, at 5 months of age her parents transferred her inpatient care across the country to Delaware to receive guidance from the Nemours skeletal dysplasia team. She required coordinated multidisciplinary care from multiple specialists over her months-long hospital stay, which was possible given the specialized expertise of Nemours providers. Nemours offers care to individuals with skeletal dysplasia until the age of 35, so during Myah’s admission, her parents Brian and Alana also received multidisciplinary evaluations with the Nemours skeletal dysplasia team. We cannot wait to see what the future holds for Myah and her family, and will be here to support them along the […]

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10 Years Later — Max’s Story

Max Paul turned 18 in July this year. But several months after he was born at Arnold Palmer Hospital for Children in 2004, he vomited blood and went to the emergency room there. Max was admitted, but they didn’t have a bed for him, so he and his mom spent the night in the ER at Arnold Palmer, sleeping on a stretcher. Mom Lori remembers a geneticist from Nemours was added to Max’s care team, and Max was diagnosed with cystic fibrosis. He joined the CF clinic at Nemours. Around that time, mom remembered Nemours was applying to build the hospital in Orlando, and so when the question would arise, “Does Central Florida need another children’s hospital?,” the answer in her mind was a resounding, “Yes!” “We were at the right place, at the right time to become part of Nemours,” said Lori. When it came time for the groundbreaking ceremony […]

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Worth the Wait — Edwin’s Story

Edwin was born with Pierre Robin sequence, a rare and serious condition where a baby’s jaw is so small that the tongue blocks the airway. Because of the complexity of his case, Edwin was monitored closely in the NICU until our craniofacial airway team, including a plastic surgeon and otolaryngologist, were able to open his airway by bringing his jaw forward. “My initial goal, after making sure Edwin was safe, was to reassure his parents that everything was going to be okay. We had many discussions about the options and decided that mandibular distraction—bringing the jaw forward slowly over time—was the right option for Edwin and his family,” explains Dr. Brian Kellogg, division chief of plastic surgery, Nemours Children’s Hospital, Florida. “Using a customized computer model, I was able to carefully plan Edwin’s surgery and the movements of his jaw bone.” Because Edwin had been in the NICU since the day he was […]

POSTED BY: Guest Contributor

POSTED BY:
Guest Contributor