Hi,
I really was hoping that my wife and I could get some much needed answers to help our son and ourselves with questions about his hydrocephalus. Please read my other post about "Gray Matter" and let us know if you have any insight here. Sometimes we wonder if the doctors are trying not to hurt us by telling us the truth about his condition. Thanks for taking the time to respond.

I'm so, so sorry of what you have gone through, and are going through. I don't have an answer. But I do care. My thoughts are with you, and I pray there is someone who can give you some input that will be helpful.

Thanks for writing. I and sure everyone here on the forum cares about all of our problems as well or we would not be here reading. Thanks to all. He was the smallest child the doc had ever placed a shunt in, at 2 lbs. He is a miracle child to even be here. Just wish we knew what the future held. It would be great if all children outlived their parents. Not always true. Are there any medical proof that having hydrocephalus shortens ones lifespan? I guess we are growing tired of the vague answers and are wanting some blunt to the point truths. Hope you have a great day!

Hello,

My son started life about the same as yours. He is 23 years old now and doing well. He was born at 27 weeks weighing in at 1 pound 11 ounces and then losing half a pound before starting to get better. He had a grade 4 cranial hemorrage at 1 month and suffered from every medical issue your can imagine. The doctors told me he wouldn't live through is first night let alone the first 2 months of his life.

He has had over 40 brain operations. Most of those were during the first 14 years of his life. He also had other operations that I have kind of lost track of including heart, gastro, eye, etc. He was completely healthy for 9 years. Last June he was acting funny and sure enough he had a shunt malfunction. 3 months later he was still in the hospital. He almost didn't make it. The doctors couldn't figure out why he was posturing, having seizures, and deteriorating because the CT scans looked normal. He was eventually put on life support because his lung collapsed, had pneumonia, kidney failure, several infections, and a blood clot in his subclavian and jugular veins. He lost the ability to walk and talk and his right side was very weak.

The chaplain was sent in to say the final prayer for him...and then he started to get better! He bounced back, went to physical rehab, learned how to walk and talk again and is back to his own apartment, working, and going to school. He was discharged from rehab in late October.

The reason I tell you this story is to make the point that the doctors don't know and can't tell you what your son will or won't do or how long he will live. Through all of my sons fights and struggles I was told to brace myself for the worst case scenario. What I would do instead was be there for him and love him like it was his last day and push him like he was going to live forever.

He is doing things that the doctors said he would never do. Don't worry about how long your son will live...none of us know how long we will live. Enjoy every day with him and teach him as much as you can about being happy and working with what he has to work with.

I hope this helps. Sorry it is so long winded.

Hi! Sorry I can't be of any help w/your questions either, but I do really feel for what you are going through.. Your son sounds like a true miracle..

Thanks for sharing your story, jhamilton... That gave me tingles... *and not ones that my sx's provide*

This is what NT is all about~~ Members helping members and sharing what you feel comfortable sharing.

Glad to have you all here!!!

There was a little girl in my daughter's pre-school group where I helped out regularly. The parents had also been told she would not survive the night, she would not live longer than a few weeks, she would not exceed three months, she would never walk or talk, etc. etc. as she progressed and progressed because her parents worked hard with her and refused to take no for an answer until they had to. She was 2,5 years old at the time, walking although shakily, talking although not very talkative, obviously of at least normal intelligence, and the only thing that looked a bit odd about her that she moved a bit slowly and shakily and that her head was slightly big.

Like the other lady said, they just don't know. What I learned from those parents though, is to take initiatives yourself. Trust your own thoughts and intuition if you think your kid can do more than they tell you. Excercise, be creative in your solution-seeking, don't sit back and wait for the things the docs offer to work by themselves. Be very loving and affirmative.

These docs know that your child is very fragile because at any time, like the other lady said, something can happen in the brain and you might decide that they obviously made a mistake and sew them because only yesterday they said something hopeful. Also they try to prepare you for the worst.

Anyway this is what I think of it for what it's worth.