The purpose of this site is to help people whose children have Patau's Syndrome. Here these people can share ideas and experiences related to this disease and about the way to provide the patient a life with best quality.
A brief summary of my life
I was born on 17th October 2002, in Rio de Janeiro (Brazil). My parents didn't know about the chromosomic alteration before childbirth, that is Patau's Syndrome ( Trissomie 13 ). I had polidactilia, a big umbilical hernia, cardiac problems and a size problem in my both eyes. I went strightly from childbirth room to Intensive Care Unit, with hypoxia. After six days in Intensive Care Unit I went home and I'd lived well ( considering the circumstances ) until 6 months of life. After that I started to have lots of pneumonia episodes and I had to stay at the hospital sometimes ( I had too much secretion which made difficult to breath ).
In April 2003 my parents have moved to Recife ( Pernambuco - Brazil). Recife is a big clinic center. I went straightly to the hospital and stayed there for 3 months with endocardite and brething problems. This time at the hospital I lost oral stimulation ( in a Intensive Care Unit ) and I could not be feed by mouth. By 6 monyhs it was necessary to use a gastric souding-lead.
At Christmas and beginning of 2004 I was at the hospital, but few days before I was at home, with special cares. By April I had a new pneumonia episode and I had to take some medicine...It was so hard....An asthma crisis turned a O2 machine necessary. I got worse and I had a serious lung problem. It was to hard to me...God called me 6th June 2004. I was 1 and a half years old.
I Had many convulsive crisis like "cry crisis". It took some months until a doctor could give me right medicine.
It was very difficult to me the continuous secretions suctions and the medicines I had to took. Certainly a home-hospital was very important to my life be better. I thank God for giving me my special parents and brother who loved me... and still love me ...And I thank for having a good doctor ("aunt Alba")... I thank for having good people aroun me, taking care of me...I cannot say names or I would forget someone....
A kiss in your heart.
My E-mail contact: alterego@ig.com.br
