Yanex’s story began at just nine months old, when his primary care physician noticed something amiss.

Keyshla, his mother, recalls that during a routine check-up, she expressed concerns about Yanex’s lack of developmental progress. He wasn’t attempting to sit or crawl, and his movements were limited to lifting his head when placed face down. However, it was Yanex’s head shape that raised the most concern for his doctor. During this check-up, Yanex’s physician ordered an X-ray. That day, the report arrived with a diagnosis of craniosynostosis.

Craniosynostosis, a problem where one or more seams between bones in a child’s skull closes too soon, had a significant impact on Yanex’s life prior to treatment. “Yanex only looked comfortable when he was in the car seat, stroller, swing or while being held,” says Keyshla. “He was also exclusively breastfeeding for over a year. Yanex was not independent in the slightest, as if he was not capable of moving except to turn his head, which required constant monitoring and care from us.”

Yanex’s path to recovery involved a series of treatments from his medical team, Dr. Brian Kellogg and Dr. Andrea Scherer, at Nemours Children’s Hospital, Florida. In 2019, his care team remodeled and expanded Yanex’s forehead. Then, in 2021, Yanex underwent another procedure to expand the back part of his skull and give his brain plenty of room to grow.  These surgeries have enabled Yanex to achieve remarkable progress.

“It is a scary thing for any new parent to be told their baby has a diagnosis of craniosynostosis,” says. Dr. Kellogg. “I consider it a great privilege that Yanex’s parents decided to trust our craniofacial team to take the best care of their child. Yanex required two big operations to remodel and expand his skull due to there being multiple areas of early fusion. It has been amazing to see the progress Yanex has made since his last surgery. Watching him grow and thrive as a result of help we provided early in his life brings me great joy!”

“I can only say great things about Nemours,” says Keyshla. “Due to my previous experiences at Nemours with my other children, we were willing to do a 7-8 hour drive so our son could have the care we thought was best. Customer service was always top notch. English is not my first language, and all the staff, mainly the doctors, always made sure I understood everything they were explaining in regard to his diagnosis, procedures and recovery. Even with long distance and COVID-related lockdowns, they were always attentive, especially when there were concerns.”

“The journey to recovery has been nothing short of miraculous for Yanex,” says Keyshla. “After the surgeries, he transitioned from being seemingly immobile to crawling, walking, and running within 7-9 months. Although there was some speech regression following the second surgery, Yanex quickly began expanding his vocabulary and attempting to mimic words and pronunciation from his parents and siblings. Today, Yanex is a thriving toddler who is enjoying life to the fullest.”

As Yanex grows older, Keyshla hopes he can relish every stage of his life as much as possible. “We are hoping that in the next few years he can close those delay gaps, but seeing him with joy, happiness, and enjoying life to the level that he has been; nothing can replace that,” says Keyshla.

For parents and patients facing a similar journey, Keyshla says, “It is extremely important to educate yourself and ask questions. You should trust your instinct about what is best in the long-term, stay positive, and seek support. Last but not least, seek professional help to be able to learn to navigate, process, and manage emotions. Parental communication is crucial during this process. We found out the hard way that siblings get affected too; communication with them to prepare them and professional help may alleviate the library of questions they may have.” Yanex’s progress, along with the support of his family and dedicated team at Nemours Children’s Health, points towards a bright future ahead for Yanex.

The post From Immobility to Independence: Yanex’s Story appeared first on Nemours Blog.