Welcome to our webpage about our son Tomasek and his life with CCHS.
Tomasek was born 4.12.2016 by C-section (36 week). From the moment he was born he required continuous breathing support. He was moved to the hospital in Hradec Kralove. After 3 weeks of hospitalization he was diagnosed with very rare genetic mutation called CCHS - Congenital Central Hypoventilation Syndrome. He was also diagnosed with Hirschsprung's disease (it is a condition that affects the large intestine (colon) and causes problems with passing stool) which is often accociated with CCHS. Tomasek´s large intestine (colon) was operated in Motol hospital in Prague. He went through ileostomy and now have an ostomy pouch for collecting stool. Tomasek only got 10% of colon left.
After a week of hospitalization was Tomasek moved back to hospital in Hradec Kralove where he went through tracheostomy (a surgical procedure which consists of making an incision on the anterior aspect of the neck and opening a direct airway through an incision in the trachea). After that Tomasek start to grow and for about 14 days looked everything fine. Until a day doctors noticed abnormal sugar results in his blood - hypoglycemia. After doctors help it came to normal and now he is without any pills.
Today Tomasek weighs 4 kg and very soon (accomplishing 5 kg) will have Tomasek another surgery in Motol hospital and right after arranging life-long ventilatory support for home.
Its not going to be easy but Tomasek is very brave little boy and we love him very much. We will do as much as we can to have him home with his loving family.