I'm really desperate-please help!!!

[sseka]

my baby which is 27 days(born on 10 august 2002) is having very serious problem.He is diagnosed with noonan syndrome, bilateral hernia, congenital pneumonia and esophagus motility disorder. The most crucial now is the esophagus which it fail to contract completely. So he cannot even swallow his saliva(and the food of course).He is now under intensive care unit with the treatment to remove the lung infection and given oxigen to breath. Right now he is given milk through tube which goes direct to the stomach. So the doctors were telling me they want to operate him and make a hole(somewhere) which the food can go direct to the stomach without passing the esophagus. I feel really scared, worried and upset.Which i dont know is it the right things to do. They are planning to operate him next week(I did not give the consent yet). Is there any advice from people out there in this world to help save my baby. Im writing from Malaysia. Maybe there is someone who ever know about this. Since the doctor tell me this is the first case they ever come through. Please help me!!!

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[kellieb]

Hello, my daughter has had a feeding tube for her whole life. It is the best decision I have ever made. You nedd to really focus on your baby, I know it's all very overwhelming but afterwards you will sit back and think....wow  why was I so afraid? So I would just ask lots of questions and write down what you want to know because I know I got so nervous that I forgot what to ask. I am also surprised to hear the Dr.'s there have never seen this before....here in the USA these things are seen alot and we also have excellent Dr.'s too which  I'm sure your country does also. Look on the internet under ..gastrostomy tubes and feedings.....this will give you some insight. also try different hospital websites  here are some which may help.....  Philadelphia Childrens Hospital, Boston Childrens Hospital, Pittsburgh Childrens Hospital, Minneapolis Childrens Hospital. Or if you don't find anything helpful email me at ***@**** my name is Kellie and I have a 13 yr old girl with many medical problems so I have been through just about it all so I can help you if you wish ok? Please reply when you have time and I can try to help you as much as I can and don't worry...everything will be ok....think positive

[chatngal]

I have worked with lots of people who have feeding tubes placed in the stomach, for them it seems to be very helpful. Without the tube they could not eat or get fluids.  I understand how scared you must feel, my daughter is going to have a surgery, and it is very different being the parent than it is being the caregiver. The nurses and doctors will teach you how to care for the tube and how to feed your baby. And if they are able to correct her problems at some time, then the tube may be removed.