My full name is Samrat Banerjee.
I am the father of my 1 month old male baby who as the doctors are clinically assuming is suffering from SMA Type 1 disease or Congenital Myopathy. His current weight is 3.6 Kgs.
He is our FIRST BABY. Me & my wife are both 27yrs old.
He has issues with the breathing pattern.
Currently my child is admitted in NNICU in Apollo Gleneagles Hospitals, Kolkata, India & supported by continuous Oxygen Supply & tube feeding.Saturation is between 95%-100%. Respiration rate with Oxygen is betn. 30-45.
He took birth on 22nd August, 2011 & was immediately admitted in the NICU dept. of some other hospital with the same support as mentioned above. Later he was discharged on 6th Sept, 2011 & after that we provided him with bottle feeding, breastfeeding & no oxygen.
The baby was performing well then & used to throw his legs-hands which seems that he is facing irritability during feeding/holding in the arms.
He used to cry very loud & his sleeping patterns were good. Excretion was fine & faeces were rigid/in a very good shape. No issues in urination.
On 22nd Sept, 2011 he had severe cough accumulation in his chest & therefore admitted to hospital as cough was flowing out of his mouth which looked odd.
As far none of the tests have came positive. Test for muscular biopsy has been sent to Mumbai for further analysis.
My mother's father & my wife's mother's mother are brother & sister.
Is this the cause for the SMA Type 1 my child is facing?
I am totally distressed due to this & trying to convince my wife as far as possible.
Please let me know any therapy to cure the same. I am planning to go to Mumbai in the mid-week of October for better treatment reasons.
What are your suggestions here as we desperately need help!!!
Also let me know what is need to be done by us to help cure our child & give him a good future.