Sorry if this isn’t the best written post. I’m really at a loss of words tonight.
Our baby boy is due in mid October, and we just found out that he has Hydrocephalus, an excess of fluid in the brain.
At this stage, the doctor won’t spectulate on the extent of the problem or what else that means. My wife is scheduled to go into the hospital in two weeks for several days of extensive testing. Often when babies have one problem, they can have others, so our doctor wants other specialist to looks at the tiny lungs and other organs as well.
Looking on the Internet, the problem can range from fixable to catrastrophic.
We were going to fly over to the States for a two-week vacation and so my family could meet my wife, but we’ve had to cancel the trip.
We’ve really been looking forward to the birth of our first child. We’re still looking forward, but there’s other emotions mixed up as well.
My wife is holding up really well. She was concerned that I would pull back. I had always thought that it would be really hard to have a handicaped child, but now looking at the real possibiliy of having serious problems, I have a different view. You don’t love someone less, and we’ll do the best we can.
It’s really too early to speculate. We’ll know more in a couple of weeks. Until then, we’ll just work at keeping going on as normal as we can.
I’m very sorry to hear that. I wish you the best. I believe there is a poster around here somewhere whose child has a form of hydracephalous. You may be able to get some information on what to expect. Good luck.
I feel for you. Friends of mine were told in December that their baby-due in April- appeared to have a hole in her heart. “At this stage of development that’s not too uncommon, will probably take care of itself before baby’s born . . . Don’t Worry, have a good Christmas with your family! Come back in six weeks and we’ll check again”
Baby is now fine, no hole in her heart, and a real cutie.
But it brought home to me some of the ways in which I’m not always sure that we are better off being able to find out if something is possible wrong before birth. Yes, in cases where a problem can be detected and fixed sooner, it’s great. But in the cases where a problem is possible but resolves itself, or a problem is detected but it takes time to determine the extent of the problem . . . it’s harder to know if knowing is better.
You have my sympathies, and my hopes for the “best”, whatever that turns out to be.
That brought tears to my eyes, which doesn’t happen to me often around here. Good luck to you and your family, especially its youngest member, and try not to anticipate bad news – the problem is fixable until you hear otherwise.
[ul]
[li] "…and the most severe group with 95% of the cranial cavity filled with cerebrospinal fluid. [/li]
Of the last group, which comprised less than 10% of the study, half were profoundly retarded. The remaining half had IQs greater than 100.
[li] “Later, a colleague at Sheffield University became aware of a young man with a larger than normal head. He was referred to Lorber even though it had not caused him any difficulty. Although the boy had an IQ of 126 and had a first class honours degree in mathematics, he had “virtually no brain”. A noninvasive measurement of radio density known as CAT scan showed the boy’s skull was lined with a thin layer of brain cells to a millimeter in thickness. The rest of his skull was filled with cerebrospinal fluid. The young man continues a normal life with the exception of his knowledge that he has no brain.”[/li][/ul]
You have my sympathies, and I apologize if my post is ham-handed; I only wanted to show that some opinion exists that hydrocephaly is not always a sentence of severe damage.
I was going to say the same thing, but I was hesitant to since I couldn’t recall the cite from the Doper whose child has this. But as I recall, he is functional.
My husband (RickQ on the board), was born with hydrocephalus in 1976. He was diagnosed at 3 weeks and had a shunt implanted in his skull. He has had a few problems with needing shunts and tubes replaced, but aside from that (and some wicked looking scars on his head) he is perfectly fine. He is smart as a whip (solves puzzles better than I do), has a college degree, has no physical problems, etc. His head is a bit big (has to buy XL hats), but nothing outside the norm of non-hydrocephalic people.
I hope your child’s outcome is as good (or better!) than Rick’s. All the best.
Feel free to email either of us if you would like. Emails are in our profiles. Just put SDMB in the subject line.
I guess this is where people come to offer empathy or pertinent information. I have none of the latter to give, so let me leave you with my best wishes. If either of us was still Mormon, TP, I’d pray for you.
I was diagnosed with hydrocephalus when I was ten months old. I’ve had several shunt revisions since then, the last when I was eleven(fourteen years ago). I’d say I’m of at least normal intelligence(going further than that just seems obnoxious). My head is huge, but that’s a family trait. If you need someone to talk to, please feel free to email me. My email is in my profile as well.
-Lil
Hydrocephaly is definitely not automatically a disabling thing. If caught early and treated with shunting, it’s possible to have no ill effects. The bad thing about shunts is that they can fail and sometimes with no warning, so you have to be on guard about it.
My little guy was diagnosed with hydrocephaly at 6 months old. His neurologist was in the process of scheduling a shunt surgery when all of a sudden my son started vomiting and I did as I was told and took him to the hospital in case there was pressure building on the brain. After an overnight stay, the neurologist on duty (a different one than his) told me that in her opinion, he did not have fluid on the brain, but that his ventricles had compensated by enlarging, and he did not need a shunt. If she hadn’t seen him that day, he would have had a needless brain surgery. That taught me that sometimes it’s best to get a second opinion.
I am wishing very much that everything goes okay for your baby- keep us updated.
I should add that 7 years later, he still has not needed a shunt. He does have a big ol’ head, but it hasn’t grown in a few years so he’s growing into it. On the plus side, I’ve heard that celebrities often have large heads, so he may be a star someday.
