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Name: melisw063

[ Original Post ]

Hi my name is Melissa and my son Phyllip was born at 27 weeks due to an E. Coli infection in the amniotic fluid. Due to his early delivery he ended up having a Grade III IVH that has caused hydrocephalus. After his 1st shunt placement he developed a severe case of bacterial meningitis (thought to be from the first E.Coli infection). The back of his brain had flipped inward and the infection had caused 3 areas of his brain to have moderate brain damage. The neurologist is expecting him to have CP and a very high chance of mental retardation. His vision hasn't been diagnosed yet, but its seems to me and my husband that he cannot see.
I would like to chat with anyone who is in my position that may have any advice on how to deal with this or any information about any of these topics that my son has. ↓

Name: mommyinwaiting | Date: Oct 28th, 2006 4:04 AM

Hi Melissa, my son was born with genetic problems. He is 18 months old and it has been a very up and down year and a half. The best thing that was told to me (after soooo many negative things) be happy for the achievements you do get. When I first heard that, I didn't understand and I was upset. I used to ask will he walk, will he talk. The doctor said probably no. Then reality hit he may not even be able to hold up his own head, let alone sit, crawl, or walk. So as he reaches each milestone and they have been very late, I am grateful. Because at least I have those. It took him a long time to smile, so when he finally started smiling it was the most BEAUTIFUL thing I have ever seen. Also there is early child developement your doctor can refer you. There is groups who can help you understand and cope. And there is always us, mom's with babies with special needs :)

Tina ↑

Name: mommyinwaiting | Date: Oct 28th, 2006 4:10 AM

Plus with therapy he is achieving those milestones he wasn't expected to have.

My son has microcephally (small head/small brain) he is visually impaired/legally blind, low muscle tone, soft cleft palate, his neurologist has said he is mentally retarded although they normally don't diagnosis this until the age of 3.

One more thing, I am sorry you and your husband are going thru this. Many people will not know what to say or how to say it, so they will not say anything at all. And it is ok to cry and release we all have done it (and will do it again in the future when something hits us the wrong way) ↑