My best prayers for you all,TokyoPlayer. You are such a loving person, and a great father. All strength to your good heart.
You and your wife and child have been in my mind and my heart since your original post.
I am so sorry that the news of your son’s condition is so devastating. It’s simply not fair.
But I am glad for your son that he has you and your wife for parents, for however long his life here on earth may be. You both sound so loving and committed and generous of spirit. Thank goodness he has you both to love him so much already.
Please let us know the name you choose, so we can remember him along with you.
Hugs and love,
Stainz
So sorry. Wishing you the best possible outcome.
I am so sorry for your pain. I was going to offer what pathetic comfort I could by telling you that most American hospitals now have special keepsakes for you–a lock of your son’s hair, a picture of him, a footprint, if you only have a small fragment of time with him. Most parents are grateful to have them, after a time. But I don’t know about Japanese hospitals. Maybe someone could ask, if it is important to you?
I hope that I haven’t made things worse by bring this up.
TokyoPlayerClan, you all have an incredibly difficult journey ahead of you. You sound as though you’ll be there for each other. Take gentle care of yourselves, too. Godspeed.
I’m so sorry. All I can say is that, whatever his fate, your son will be loved for every moment of his life. And he will know it–that is the one thing babies can always, always feel.
i’m so very sorry.
prayers for peace and strength are sent your way.
TokyoPlayer, I was so hoping there would be a different outcome. I’m hoping for a miracle, beyond the miracle that you already have in your amazing family. All three of you are in my thoughts and will remain there for a very, very long time.
E.
My heart breaks for you both right now.
I really don’t know what to say, but I nodded in complete, heartfelt agreement with every post stating what an amazing father you are.
You’ll be in my thoughts.
How I wish there was something I could say or do that would ease the pain that you and your wife are going through. But there isn’t–except to let you know how terribly sorry I am that you’re both suffering so. Just know that your friends here at the Dope share your pain, and offer all the comfort and love that we can.
I am so, so sorry. I cannot imagine how hard this is for you and your wife. For whatever words on a screen are worth, please know that all our wishes are with you.
My thoughts, too, are with you. As a parent, and having helped a close friend through a remarkably similar situation, I have an inkling of how difficult it is and unfair it must seem. I’m sure you’ll find your path through this, a dark time though it be.
I know the name of my two female cousins who died before being born.
Today I’ll go to the family grave, where they are buried along with, among others, our cousin who died at 11 years old after a very long illness, and pray for your family.
Tokyo Player…I am very sorry about the news. I feel very bad. However, I do know of a site that has some very good information on your baby’s disorder. I know a lot about rare disorders, and doctors really tend to have very outdated information about rare disorders. Perhaps this site might be able to help you. There aren’t really any stories on there about kids with this, who function “normally”…but there are babies out there who have survived and lived a few years. I can imagine how hard this is…but I just wanted to help you with some more information: http://hydranencephaly.com/index.html
It brings tears to my face! 
I’m so very sorry.
Be well, and my thoughts are with you.
G
Hearfelt condolences, man.
-Tcat
This is a very excellent point. (Especially if you are at a teaching hospital where the fresh faced doctors are rotated more than the left overs in your fridge. Find an grizzled, worn veteran doctor with lots of gray hair and become a pest to them, if you have to.)
Educate yourself on everything:The good, the bad and the ugly. That way whatever happens, you and your wife can make an informed decision. The more you know somehow makes it an easier bitter pill to swallow.
Pregnancy isn’t suppose to be like this, it is suppose to be a joyful and hopeful time. You and your wife have been completely robbed of that and I am so very sorry for this. You have every right to feel all kinds of raging emotions. Let them happen as they happen, you and your wife are human and you don’t need to man-up about anything.
This is the freakin’ sucker punch in the heart of life.
I wish with all my being that I could wave my magic wand and make it all better.
The most important thing is that the two of you are still wonderful parents and that you are committed to each other. (This would be the " Thru **sickness **and health" part of those pesky wedding vows. When we mutter those words in our deer-caught-in-a-headlight look we just never fully know what the ‘in sickness’ part is going to encapsulate.)
Take it all one moment at a time. Take care of your wife and yourself.
Joan
I’m so sorry, TokyoPlayer.
You and your family, and especially your son, will be in my thoughts.
I’m so very sorry. You’ll be in my thoughts.
Thanks again everyone for your kind words of support.
We went again to the hospital and received the first good news in a while. TokyoBaby, who we will name Ian, written both in English and in Chinese, meaning serene, is now in a normal, head down presentation. If he remains so, it may be possible to have a normal birth.
Our doctors are wonderful. Our neurologist is one of the top experts in the world, and has written many medical papers on these conditions.
The team spend another hour with us today, answering all of our questions. They even thanked us, for the amount of research we’ve done, and for our approach to the situation. The neonatologist said that he wished that more of the parents were like us.
Unfortunately, Ian’s head is still growing. It’s 10.3 cm today, with the cut-off of 11 cm, in which they will have to act. TokyoWife will go in for another MRI on Wednesday to see if her pelvic bones are large enough to give a vaginal birth for a baby with this large of a head.
My mother will fly out on Thursday and TW’s sister will come this weekend.
I can’t thank everyone, so I hesitate to mention people, but I would like to say:
For eleanorigby Thank you for your suggestion. My mother had already talked to me about it, including the locks of hair. We’re planning on this, but it’s so nice to have people sharing their suggestions and concerns.
For HokkaidoBrit, I, too, I paid attention to your posts, including your concerns over your boy’s learning disorders. Your advice is always helpful and welcome.
And really, everyone. I can’t say how much it means to me, for a group of people to think of us, and pray.
I read somewhere about a family that broke apart during a tragedy, and the comment was given that people either grow together or apart at these times. I’m so thankful that my wife and I are growing closer and closer day by day. When she leaves the rooms, her friends tell me how much she appreciates me. Of course she does as well, but it’s nice to hear that from her friends. It’s so nice to be married to the person you most want to be with.
We’ll have more children. We want a family and to have children. We had already talked of having two or three, and this doesn’t change anything.
No matter what happens, I want to give Ian the best life he can have. I can’t wait to hold him, and hug him. If we have him for a few minutes or for a few decades, I’ll give him all I can. Children aren’t like cars – you can’t send them back if there’s a few scratches.
While we were at the Children’s Center today. There was a mentally challenged teenager, maybe on a four or five-year-old level. In the past, I’ve pulled back, but today I interacted with her like I would with a normal child – showed her magic tricks and made her laugh. She had a great laugh, enough so that it really embarrassed her mother. I guess most people don’t understand, but I told her mother not to mind. We had a great time, and again, I decided that no matter what happens, I’ll do the best I can for Ian.