I know nothing aboutthe condition, but I’ll pray for your family.
Wishing the best of luck to the Tokyofamily. You seem to have a great attitude about it already, and I hope that all the worry turns out to have been unnecessary, when TokyoBaby is born in fantastic shape.
Sorry to hear you are facing so much uncertainty. I certainly wish you and your family the very best. It is nice to see you’re prepared to accept and love your son even if it turns out that he might have disabilities.
TokyoPlayer, I just wanted to add my message of support to the rest.
I am the RickQ my wife Brynda was referring to. I have lived for 30 years with Hydrocephalus and for the most part have had a very normal life. I have had a few problems over the years which have required further surgeries (blocked tube, failed shunt) but they were all fixed pretty easily. On a day to day basis I don’t have any ill effects from my condition.
I also want to reiterate what Brynda said. If you want to e-mail one or both of us, please feel free. Brynda probably knows more about the medical aspects of it (because she reads lots of medical stuff) and I know more about the living with it on a daily basis.
I hope everything turns out ok with your baby and that you are your wife are doing well.
More good wishes headed your way.
And more, from this area.
Crossing my fingers and toes for baby.
Still, wow. That one guy with honors in math and virtually no brain. Whoever said “it ain’t the meat, it’s the motion,” sure said something. Anyway, it’s apparently not the end of the world.
Good luck to your family, TokyoPlayer.
Actually, your poor baby seems to be pretty lucky.
It’s one baby whose parents care a lot for their baby, and one baby whose parents do their considerable very best to get as much information as possible and care for their baby the best they can.
{{{{{{{{{{TokyoFamily}}}}}}}}}
TokyoPlayer, I know that some people have questioned if it’s good to know in advance or not, but I think it is. My second cousin has it, caused by also having Spina bifida. She is severely disabled because the doctors didn’t catch it before it caused brain damage.
On the other hand, I worked with a little boy who has it too, was treated at birth, and is of average intelligence. It probably will be painful not to enjoy the rest of the pregnancy without a lot of worries, but it might be very good for your child that the doctors know his condition already.
A friend of mine was diagnosed as having hydrocephalus as a baby - he had some surgeries (didn’t elaborate) and other than having a slightly larger-than-“normal” head, he is just fine, at 34 years old.
I am sorry you and your wife are having to deal with this news, but I am so touched by your post and your attitude. I wish you both all the best, and will check for updates on your babe.
((((hugs))))
My thoughts are with you and your family.
We were in the NICU with the most adorable little boy with hydrocephaly. He had shunts in and was very affectionate and energetic the whole time we were there.
We ran into him and his parents a few months ago and he’s doing wonderfully in kindergarten and is still just a ball of happy energy bouncing off the walls.
Thanks again to everyone for your kind words of support and concern.
Hearing stories about people living normal lives has really been of great comfort. The initial shock is over and we’re doing more research now. I’m preparing for whatever happens, but really hoping for the best. It sounds like if there aren’t any other complications, then while it may not be a stroll in the park, that things can be relatively normal. I really hope this is so.
My family and friends have also been very supportive, which makes it much easier. Unfortunately, TokyoWife’s mother gets panicky easily (she freaked out when she found out that my wife had a cold) so TW isn’t telling her yet. OTOH, my mother was a newborn / premature baby nursery nurse, so she’s really good about sick babies.
As I wrote before, I’ve often looked at handicapped children and really pitied their parents, and thought that I could never do that. However, when we went to the children’s hospital on Monday for the confirmation of the problem, there were many children with very visible handicaps, including misshaped heads, and it just got this feeling that it would be all right. No matter what happens, even if there are other complications, that I would still love my son. That we would do what we can and enjoy the experiences. There was a family seated in the waiting area next to us with a baby that seemed not normal. But the baby would look at me, and so I made eye contact and played a little. The mother noticed and smiled, and gave me the baby to hold and play with. I think that I would have really pulled back before, but it was just a very normal feeling.
TW is taking it very well. She had been concerned about my reaction. Apparently many if not most Taiwanese and Japanese husbands don’t get involved much if the child has handicaps. She understands me better now, and is very relieved. The other day she told me if there are problems with our baby that it’s better for the child to be born to us, as two supportive parents and also since we have more resources to take care of him than many other people would have.
We’ll know more on the 21st and there isn’t much to do in the meantime. We’ve gotten over the shock so it’s just a matter of waiting and hoping for the best.
Actually, there is something do to. They’ll hospitalize TW for four days for the tests, and that will drive her nuts. I’m preparing things to help her spend the time, including getting a wireless internet connection (which uses cell phone frequencies since the hospital doesn’t have a wireless LAN), a portable DVD player and some craft things.
You have our best wishes and hopes that everything goes well. Our first son is due at the end of August, I look forward to seeing them playing together sometime.
One of my best friends is going through something similar with a baby who didn’t have oxygen during delivery. Its a lot of worry and wait - and will be for a long time.
Here is hoping all your worry is for naught. All the best.
I am keeping your family in my thoughts and will be biting my mental nails until we hear back after the doctor’s appointment on the 21st.
TokyoPlayer, I just wanted to offer my very best wishes for your family.
TokyoPlayer all of you will be in my thoughts and prayers. It’s true that a lot of babies born with hydrocephalus go on to live lives with little to no problems at all. Since you know early and will be able to prepare, your little boy will stand a great chance. Still, your attitude that it’ll be ok no matte what is wonderful. Please keep us informed. We can be crazy, bitchy and just plain weird at times, but this place seems ready to offer support and encouragement better than any other message board (ok, I know a couple more but they sorta came out of this place) I know of.
TokyoPlayer, best wishes and prayers for the whole family. That’s one lucky little baby on the way. I admire your dedication to him already; sounds like he picked the perfect set of parents to be born to. Please do keep us updated.
GT