My son , Muhammad Sodiq was born on 29th of September 2008 through forcep delivery. He was noted to be dusky at 4 hours of life & was sent to SCN subsequently. Later on was brought to NICU for CPAP but he failed extubation three times . He was then referred to the genetic doctor & was tested positive for PHOX2B genes confirming of above diagnosis ( CCHS).On the 5th of Nov 08 , he underwent tracheostomy & surgery on his rectum due to Hirshsprung disease. He was sent home on 13th of December with stable condition. (Stable on home ventialtor & NG tube feeding .)
After 3 months at home, he gradually begin to feed orally & only need to be ventilated with the home machine when he sleep.He went thru many doc. appointments & therapy & it helps him a lot. Now, he's 10 mths old & he is a very happy boy who loves to smile & often makes a lot of noise.... We are glad to see him progressing very well on his oral feeding & other developments ..that's really brings joys to us & our families whenever we see him. We pray hard to god & hopefully he will be able to overcome his condition as he grows up. Insyaallah..
My son , Muhammad Sodiq was
My son , Muhammad Sodiq was born on 29th of September 2008 through forcep delivery. He was noted to be dusky at 4 hours of life & was sent to SCN subsequently. Later on was brought to NICU for CPAP but he failed extubation three times . He was then referred to the genetic doctor & was tested positive for PHOX2B genes confirming of above diagnosis ( CCHS).On the 5th of Nov 08 , he underwent tracheostomy & surgery on his rectum due to Hirshsprung disease. He was sent home on 13th of December with stable condition. (Stable on home ventialtor & NG tube feeding .)
After 3 months at home, he gradually begin to feed orally & only need to be ventilated with the home machine when he sleep.He went thru many doc. appointments & therapy & it helps him a lot. Now, he's 10 mths old & he is a very happy boy who loves to smile & often makes a lot of noise.... We are glad to see him progressing very well on his oral feeding & other developments ..that's really brings joys to us & our families whenever we see him. We pray hard to god & hopefully he will be able to overcome his condition as he grows up. Insyaallah..