“Our daughter Anna, was diagnosed with CCHS when she was one-year-old. We had Thomas Kaiser come to the hospital to try and make a cast of Anna’s face. However, at the time Anna had been through several uncomfortable experiences, so we had to postpone the procedure. The next few years Anna used standard masks and by the time she was ready to start school, Anna had developed mid-face hypoplasia, that is her face was beginning to take on a concave shape. We were worried about the increasing deformities of the face and the positioning of the teeth. We were told by our dentist, that Anna would most likely have to undergo a jaw operation, when she was fully grown. We then decided to try the Kaiser masks, and by the time Anna turned seventeen the mid-face hypoplasia was completely gone, and no dental procedures were necessary. At eighteen Anna still uses the masks and says she can’t feel them at all. Also we haven’t had any issues regarding lack of oxygen or leaking since Anna started using the masks.”
CCHS: Congenital Central Hypoventilations Syndrom
“After complications during a neck operation in 1995, I had paralysis in the top part of the esophagus, resulting in respiratory problems during sleep. I started CPAP treatment and started using a universal mask. However, the mask kept moving around, making it leak oxygen out through the sides. Also, I developed a severe allergic reaction to the mask. I was then referred to Thomas Kaiser, who produced a custom made mask from a cast of my nose. The new mask stayed in its place and is made from allergy tested materials, so I had no further reactions and returned to having a virtually normal life again. Twenty years have passed, and I still use the Kaiser masks. My work requires me to travel a good deal, and I always have my respiratory equipment with me, so I need to change my masks out more often. Many years of use has given me insight into how the mask fits my needs best. It has been my experience, that Thomas Kaiser always does his utmost to fit the mask to my wants and needs, and now I have a mask with a soft silicone inner mask. I am so happy with the great collaboration Thomas and I have had over the years, and there is no doubt in my mind, that Thomas and his masks have played a big part in helping me function as well as I do.”
Our son Gabriel (8 years old) Has suffered from CCHS since he was born, and has therefore had to depend on respiratory assistance at night. Congenital central hypoventilation syndrome). Gabriel used a generic mask for the first 4-5 years, and was getting enough oxygen. Unfortunately, due to the constant pressure on the mid face, Gabriel’s face started to deform, as well as developing an under bite.
When Gabriel was five, we switched over to Thomas Kaiser’s custom made masks, which resulted in Gabriel’s face developing normally, as the pressure was minimized.
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