My baby

Hi everyone. I would like to start by asking people to ready my profile page and give any comments on my situation that you may have. Its a long long story. Maybe I will copy and paste it here.

Our son Noah has had a rough start from the day he was born...dead. No im not kidding. When Noah was born he did not breathe for the first 20 mins of his life and required 2 shots of narcan due to a nurse giving me too much drugs in my IV. The dr was about to give up on him when he finally took his first breath. From that moment on we knew there would be problems. Noah had a very large head and his eyes were quite large.. But is the cutest thing ever. Noah could not suck never did and still cant. His bottles had to have large holes cut in them so the formula would just pour into his mouth. Dr said there was nothing wrong. At 8 months he was not able to hold up his head, roll over or sit. He was finally able to do these things around his first birthday. Noah was still on straight formula as he was not able to swallow even pureed foods. At 18 months he was able to start eating foods that were very soft and mushy but still mostly drank formula. Dr said nothing was wrong maybe i was not doing something right. Im sure i was doing fine... my 4 year old is healthy as a horse! Finally when he wasnt standing at 20 months the dr agreed to send us to childrens to see a neuro. Noah recieved an MRI and were told that he had the Chiari Malformation and that was all the info we were given. That he was sending Noah to a neuro surgeon and he walked out the door. Noah has since learned to stand and walk. His head is still large and he doesnt eat much unless its mush like a banana or yogurt or mac and cheese over cooked. He cant eat mean at all...he just gags and throws up. The neuro did tell us that the chiari was pressing on the back of his throat and causing the eating problems as well as his massive drooling issues. He is 20lbs soaking we at 27 months old. Like i said his eating is effected, he drools, he sleeps 18 hours a day, and complains of owie head very often. He has episodes where he cant eat at all and can only drink so we still have him on a formula. There are days where is has trouble walking and standing or keeping his balance. He has apnea when he sleeps. There is so much more. I am very scared. I dont know what to do or where to go? I dont want him to die. I dont want him to be sick his whole life either. I would appreciate any info on babies with this malformation.. Feel free to ask questions and I will answer them the best that I can. Also...his sister is now 8 months old and not rolling or able to sit either. Starting to worry about her too.


I guess I just have to tell you that we are here for you...there are quite a few moms on the site.

I do have to ask you...What is the pediatrition saying??? Is the doc referring your son to a neurologist???



Weve seen a neuro at childrens and he told us that he was referring him to a ns and that was all we got from him. He refused to answer questions nothing...Just told us and said it was pushing on his throat and causing the drooling and feeding issues and walked out.


My heart breaks for you and your little boy:( You both have already been through so much. You definitely want to get him in with a Neurosurgeon that specializes in Chiari. I’ve heard from many people that Neurologists and non-expert Neurosurgeons are usually a waste of time. If you look at some previous discussions, you will find links to sites that have lists of specialists. Someone more knowledgable may even post a link here for you:) I’m fairly new to this site myself. There are really great people here who will do everything they can to help you:) You may need to travel to see a specialist, but from what I’ve heard it’s well worth it. You and Noah will be in my thoughts.

P.S.- Your little boy is one of the cutest kids I’ve ever seen! He is ridiculously adorable:)



Welcome- I am so sorry for the situation you are in, Noah is sure a cutie pie and he is really a fighter too. By the sounds of it- sure sounds like Chiari that is causing the sucking gaging problems-i had issues with that,sure not fun.

That was quite rude of the doctor to just walk out on you and not say much more to you other then he has chiari and he is referring you- his bedside manner sure is lacking- Yes You need to see a Neurosurgeon that specializes in chiari pediatric would be wonderful-

I noticed that you live in Canada- I dont know what the medical care is like there, and wonder how the care is how long does it take to get an appointment? Can you choose which doctors you see? And what if you decided to go out of Canada to the United States- is this something that you would pay for out of pocket? I would search this site and see if there are any Canadian listed anywhere..might be helpful.

I did a quick search and i came across this site- has some doctors listed dont know how current they are.So PLEASE research them.