Jeune's Syndrome Research
Radiographic signs of bone healing in children after lateral thoracic expansion are being documented. This downloadable article describes how the surgery can create additional chest wall.
Read Spencer's story, one of the youngest Jeune’s patients to successfully undergo the Lateral Thoracic Expansion surgery from Nationwide Children's Hospital. Spencer led an active and happy life for 21.5 months and is now being remembered by the fund information below.
The Spencer Jarrett Bendien Fund was created in loving memory of our wonderful son to help Jeune’s Syndrome and other technology dependent children and their families, through lobbying, education and awareness programs.
Gifts to Spencer’s Fund are tax deductible and can be given online or can be sent to:
Spencer Jarrett Bendien Fund
Children's Hospital Foundation
PO Box 16810
Columbus, OH 43272-5117
The Jeune Center of Nationwide Children's Hospital has noted an unusually high (25%) incidence of tracheal granulomata in our list of active patients. This is considerably higher than the incidence of granulomata in patients with chronic tracheostomies for other reasons. The reason for this high incidence is unclear at this time, but may be related to the underlying disease. Because of the significant risk this situation presents, we are recommending the following guidelines for airway evaluation in this group of patients:
Flexible nasolaryngoscopy and bronchoscopy should be carried out on these patients every 3-6 months for surveillance purposes.
Flexible nasolaryngoscopy and bronchoscopy should be carried out immediately for the following indications:
Bleeding from the tracheostomy
Any new decrease in vocalization
Visible granulation tissue externally around the stoma
Any decrease in toleration of the regular tracheostomy changes
Parental concern for any other new signs of deterioration or decrease in overall airway stability
Dr. Gail Gordillo, Dr. Terry Davis and Dr. Robert Ruberg are shown discussing fine details of the operative procedure with a surgical and anesthesia team in Australia, scheduled to perform their first Jeune's chest expansion.
As the world's leader in treatment of Jeune's Syndrome, Nationwide Children's is consulted by teams around the world who are taking up our method of chest expansion. At the time of the picture on the right, our team consulted by phone with the doctors of a Jeune's patient in Australia, who was scheduled for surgery. The patient was a baby, and was critically ill with a respiratory infection.
We recommended postponing the surgery until the patient was in better shape. We just heard several days ago that the child is much better, and the Australian team is planning to go ahead with expansion surgery. We hope to find a way to efficiently communicate with teams like these around the world during the actual procedure.
Nationwide Children's helps physicians around the world manage their Jeune's patients. In addition to Australia, Children's has helped groups in Finland, Chile, Italy, Dubai, (UAR), and Canada manage their patients with Jeune's Syndrome. Consults continue to come from across the USA as well.