We are happy to announce that in September 2021, Avery Biomedical Devices diaphragm nerve stimulators were successfully implanted in two children suffering from CCHS, Laura and Wiktor. The operations were performed by a wonderful and committed team of the Department of Neurosurgery at the Copernicus Hospital in Gdańsk. Congratulations and big thanks to the operator Dr. Wojciech Wasilewski and his team!
The procedure was performed under the supervision of Dr. Pelle Nillson, an experienced surgeon from Uppsala. We also congratulate the brave patients and their determined parents who put a lot of effort into the process of preparing for the operation. You can read about the details of their struggles on the following FB pages (in Polish only):
And in a year’s time our next patient will undergo the same operation !!!
On this occassion Polish CCHS Foundation “Lift the Curse” together with the Department of Neurosurgery of the Copernicus Hospital in Gdańsk and the Center for Rare Diseases of the University Clinical Center in Gdańsk have prepared a procedure for implanting diaphragm pacemakers for patients suffering from CCHS::
- Before purchasing Avery Biomedical Devices pacemakers, the patient must undergo a medical examination to qualify for the operation.
- Examination is carried out by a team of specialists from CCHS Center in Poland at the Medical University of Gdańsk, the Rare Diseases Center.
- To report to the clinic, you must complete a special questionnaire (interested persons are asked to send an e-mail to: firstname.lastname@example.org).
- Patients will be diagnosed at the Rare Diseases Center. The stay in the hospital will last 3 days (Wednesday-Friday) and will be arranged individually, at a time convenient for everyone.
- The purchase of a pacemaker should be made just before the scheduled surgery, not earlier than 3 months before the due date.
- The purchase procedure should be agreed with the operating hospital.