Help Santiago Get the Life-Changing Surgery He Needs

Support Santiago’s Journey with Metopic Craniosynostosis

At just six weeks old, our sweet Santiago was diagnosed with Metopic Craniosynostosis, a rare condition in which the bones of the skull fuse too early. Because of this, Santiago will need to undergo cranial vault remodeling (CVR) surgery to allow his brain to grow and develop properly.

We feel incredibly fortunate to be in Dallas, home to one of the top specialists in the world for this condition: Dr. Jeffrey Fearon. He is internationally renowned for his work treating rare craniofacial birth defects in children. Families travel from across the country, and even from around the world, just to have him perform their child’s surgery. Dr. Fearon is not only a gifted surgeon but also a leader in craniofacial research. He has authored numerous scientific publications, contributed to medical textbooks, and holds a U.S. patent for a specialized bone distraction device used in complex cases. We are so grateful to have met him and feel confident that Santiago is truly in the best hands.

After Santiago’s diagnosis, we consulted with Dr. Fearon about the best course of treatment. He recommended surgery between the ages of 11 to 15 months. This timing is critical, as untreated Metopic Craniosynostosis can lead to serious developmental challenges. Without surgery, Santiago could face problems with his vision, behavior, and emotional regulation, as well as increased intracranial pressure, which can affect his brain’s ability to grow properly.

We have scheduled Santiago’s surgery for July 15, 2025. While it’s not easy for us to ask for help, Dr. Fearon is an out-of-network provider, meaning we must cover the cost of this life-changing surgery out of pocket. As Santiago’s first birthday approaches, we humbly ask, in lieu of gifts, for your support in contributing to his surgery fund. Every contribution, no matter the size, brings us closer to providing Santiago with the care he needs.

Santiago is the sweetest, most joyful baby, and he continues to thrive despite this diagnosis. His laughter, intelligence, and curiosity brighten every day, and we are endlessly grateful to be his parents. This journey has been unexpected, but it has shown us the strength and resilience of our little boy and of our community.

About Metopic Craniosynostosis:

Metopic Craniosynostosis is a congenital condition that occurs when the two frontal bones of a baby’s skull fuse too early along the metopic suture. This premature fusion causes a ridge down the forehead and a distinctive triangular head shape, known as trigonocephaly. Normally, the bones in a baby’s skull are joined by sutures—flexible plates that allow the brain to grow. When one or more sutures close too soon, it restricts growth and can lead to increased pressure inside the skull. Metopic Craniosynostosis affects about 1 in every 10,000 newborns in the U.S.