Cahya’s response to the syndrome

September 25, 2010 Leave a comment Go to comments

Reference on Edward Syndrome mentioned that people with this syndrome occurs 1 in 6000 babies born. 1 of 3000 Edward syndrome babies died at the age of 1 week after birth, and 50% survive until their first birthday. There are no records from several sources about the age of Edward’s syndrome survive until adulthood. This syndrome is characterized by the presence of one extra chromosome on number 18, also called Trisomy 18. Common symptoms such as weight at birth is low (although quite month of pregnancy), weak cry. When examined further, the finger point and pinkie are intersect each other, the position of ear are lower than eye, back of head small and oval. Furthermore, the organ in this baby are not normal, there are problems with blood circulation to the heart either VSD or PDA, neurological disorders in the digestive to defecation, and urinary tract is not perfect.

Please read the posting about Trisomy 18 or Edward’s Syndrome.

Cut Cahya, confirmed by genetic doctor of RSAB ‘Harapan Kita’, Jakarta has Trisomy 18, the prognosis was very bad. Alhamdulillah, Cahya already 3 years and 2 months now. The fight of her life from birth until now is a story of extraordinary spiritual experience to Cahya’s dad and mom. Prayer and support of friends and relatives are all in every Cahya’s breath. She is a miracle and the will of the Supreme Originator, Allah. To remember every days that had passed with her, the eyes are always swollen, I have something to touch, but whatever its form, shapeless longing real, quiet in silence. It was different feeling while seeing beautiful colorful clothes in stores for girls 3 years old, imagine not seeing her age-not chasing merry, this heart sometimes compassionate to look Cahya tried hard to lift up her own head, but feel powerless.

On the other hand, the hand of Cahya have tried holding a given object, though still often fall, but her eyes are always alert to try to follow where the fall of the object. If we closing the face, two tiny hands touching the face. It is very emotion to be touched by her hand. Coordinating the motion started to tidy now. Subhanallah …

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