STaRS' Stories

Gretel

Gretel Rodriguez Guzman was born in Cuba in 1982. She was a completely normal newborn with no abnormalities or problems. Four days after her birth, she developed a high fever and was admitted to a neonatal intensive care unit where she stayed for four months. She survived two cardiac arrests, and was diagnosed with septicemia (a comprehensive blood infection affecting all systems of the body). The areas most severely impacted were her left hip and femur, and her temporomandibular joints, which are the joints that connect the lower jaw to the skull. Gretel underwent several surgeries to try and mobilize the joints, which in effect had been "frozen" by the infection. She wore braces for several years, was unable to chew, faced breathing problems at night, and had an asymmetric face.

In April 1998, she underwent bilateral jaw distraction of the mandible by Dr. Schendel, his team and their Cuban colleagues. Her care was continued by the Cuban surgeons, orthodontists and physical therapists. She was able to chew again but gradually over the following year, lost some of the advancement she had gained with the surgery.

In April 1999, she again underwent mandibular distraction by Dr. Schendel, his team and their Cuban colleagues, but this time with a new device that had recently become available. The new device allowed for both vertical and horizontal growth of her face. Later, when it was time for the Cuban team to remove the device, Gretel was able to eat normally, breath without a problem, and had a symmetric face.

Gretel's lower jaw was significantly underdeveloped.   After reconstructive surgery, she has a symmetric face and is able to eat and breathe normally.

Gretel went on to become a championship swimmer, and at the age of 21 was married. Dr. Schendel and his team see her every year, as she and her mother come with gifts to the clinic. Further surgery (refinement) has been offered, but she is quite happy, and said she "just wants to live her life now".

There are a significant number of children in Cuba who, like Gretel, have underdeveloped jaws and can benefit from this surgery. By helping their Cuban colleagues advance their knowledge of such leading-edge surgical techniques, STaRS is facilitating the widespread practice of this procedure throughout Cuba. STaRS will continue their efforts in Cuba to support the practice of newer techniques that can help many children.