Parker's Pediatric Complex Care Journey
October 01, 2025

Hours after being born, Parker faced significant challenges from the very beginning. She had difficulty breathing on her own and was diagnosed with an incredibly rare and undocumented genetic mutation, including choanal atresia, craniosynostosis, and craniofacial syndrome.
Since her diagnosis was serious and would require multiple surgeries and ongoing medical care, it was imperative that Parker be treated by a multidisciplinary team of pediatric specialists equipped with the most advanced technology to ensure she received the best comprehensive care. Having been delivered at another hospital, Miles and Kelsey, Parker’s parents, put their trust initially in George Kamel, MD, surgical director of Pediatric Craniofacial and Plastic Surgery at Joe DiMaggio Children’s Hospital.
I was consulted by the neonatologist because of a breathing issue she was having. She had a blocked nasal passage [choanal atresia] that was preventing her from breathing normally, so I referred her to the hospital’s ENT specialists. In addition, Parker had craniosynostosis, where the bones fused prematurely to the skull and can prevent the brain from growing normally.
Given the complex nature of her medical conditions, Amanda Porro, MD, medical director of Clinical Effectiveness and Complex Care at Joe DiMaggio Children’s Hospital, and her team became a critical part of Parker’s care team as well.
We are looking to be proactive and preventative in care; looking to make sure that nothing gets missed. Most important is to listen to what the family needs and trying to meet them where they’re at and provide those services that they may not be aware of or may be missing. I’m going to put them first and you can tell me anything. That’s how we build that trust, is that their child is the most important for me.
One of Parker’s biggest hurdles has been hearing loss. Traditional over-the-ear hearing aids were uncomfortable and ineffective. Once she transitioned to Bone Anchored Hearing Aids (BAHAs), a device that transmits sound through bone conduction, Parker experienced a dramatic improvement in her ability to hear and communicate. She could hear sounds she had never heard before, and her speech, tone and pitch improved significantly.
“Seeing Parker thriving just means the world to us. She’s defying the odds because clinically, she shouldn’t be able to do some of the things she does," said Dr. Porro.
Now that Parker is four, she continues to visit Joe DiMaggio Children’s Hospital regularly for ongoing care. Her medical team includes specialists in audiology, ENT, neurology, neurosurgery, complex care, genetics, cardiology, orthopedics, and immunology, each playing a role in helping her thrive. Despite the many medical appointments and challenges she faces, Parker’s spirit remains unshakable. She’s a shining light, hardworking in her therapy sessions, and always full of energy.
“For parents of a child with a very rare genetic condition and complex medical issues…our moments at home as a family are so important," said Kelsey, Parker's mom. "We are where we are because of Joe DiMaggio Children’s Hospital.”
“Everybody—from the people who come and clean her room all the way up to the CEO—has been absolutely wonderful," said Miles, Parker's dad. "After her first skull surgery, my little princess had a scar from ear to ear, and this CNA took the time to play with Parker and her toys, tell her how beautiful she was. That’s a great way to sum up what this hospital is. She took the time when she didn’t have to.”