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My brain damaged baby- not expected to survive- Update

(62 Posts)
sleepysox Sat 10-Oct-09 21:59:59

I hope this is the right place to post. I originally posted 3 or 4 weeks ago in the bereavement area as my son was not expected to survive when he was born. Then a second diagnosis said he would survive after birth, but that the prognosis was poor, so I got my thread deleted as it was in the wrong place. So many people gave so much support, so i wanted to give an update.

Background:
My son was diagnosed with severe brain damage and hydrocephalllus when he I was 35 weeks pg. We found out at a scan to check for a large tummy due to diabetus. In the scan they found out that my son had water on the brain and his brain was missing key areas and had been formed wrongly.

Well, he was born by c section on 28/9 and survived. The hospital was wonderful. I had a private room and the m/ws couldn't have been more helpful.

His head is larger than normal, but he still looks adorable and at the moment he's like any normal baby. As he's so badly brain damaged, we don't know the long term prognosis, and how badly the brain damage will affect him, and we won't know these things until he starts not meeting mile stones, but at the moment we're so grateful to have an adorable, cuddly baby to love that we're trying not to worry about the future.

I'm sure I'll be posting more in the SN area in the future, once I start meeting with the social workers etc. So I look forward to meeting you all.

Thanks to everyone who offered me so much support. I couldn't have got through those bleak days without you. I know hugging is not a very mn thing to do, but I would add a hug emoticon if there was such a thing grin

saintlydamemrsturnip Sat 10-Oct-09 22:04:48

oh sleepy I am so pleased for you. xx

debs40 Sat 10-Oct-09 22:08:34

sleepy thanks for posting and telling us. I am so pleased you have your little boy to cuddle and love. Keep posting. There are many kind and wise people on this board x

MABS Sat 10-Oct-09 22:21:05

so much love to you x

moosemama Sat 10-Oct-09 22:27:28

Sleepy, congratulations on the arrival of your little boy. I don't care if its not very MN huge great squishy ((hugs)) to you both. grin

drlove8 Sat 10-Oct-09 23:25:50

sleepy, congratulations on the birth of your son.
give him an extra cuddle from me .xxx smile

TheCrackFox Sat 10-Oct-09 23:34:38

Congratulations.

Keep posting you will get so much support from Mumsnet.

x

smoking2shoes Sat 10-Oct-09 23:35:12

so pleased that things are better now

jasper Sat 10-Oct-09 23:35:13

sleepy, congratulations on the safe arrival of your precious little boy. I wish you and your family much love , health and happiness

ClaudiaSchiffer Sun 11-Oct-09 00:55:42

Sleepy, I remember your original thread, it was so heartbraking. So very many congratulations on the safe arrival of your darling little boy. I am so pleased for you and your dh. Mumsnet is rather wonderful in these situations - I'm sure you'll get lots of help and support if you need it.

xx

LottieDugalo Sun 11-Oct-09 09:55:22

Congratulations

My daughter has hydranencephaly, I'm not sure what your sons diagnosis is but the stories on www.hyrdanencephaly.com (there's also a hydranencephaly group on Facebook) are inspiring, or they were to me. We were told my dd would not make her first birthday but she's 3 now grin

So pleased for you all

troutpout Sun 11-Oct-09 09:58:16

Congrats on your beautiful boy
X

anonandlikeit Sun 11-Oct-09 10:05:31

congratualtions!
Wishing you all lots of love & happiness x

cocolepew Sun 11-Oct-09 10:22:35

Thanks for posting and congratulations smile

LeonieBooCreepy Sun 11-Oct-09 10:46:09

Message withdrawn

PheasantPlucker Sun 11-Oct-09 10:51:37

Sleepysox, I remember your original post, we 'spoke' a few times (my dd2 has hydrocephalus). Congratulations on the birth of your little boy. Sending you both love x

PheasantPlucker Sun 11-Oct-09 10:53:56

Sorry - total mistake - my dd1 has hydrocephalus, my finger slipped there. She is 8 now.

feelingbetter Sun 11-Oct-09 10:55:39

So lovely to hear grin
I posted on your other threaad (as did many familiar names here) and I am so pleased you've had a positive outcome.

Without rehashing my tale again - my DS was not expected to survive either. He is now 16 months old and though very delayed and with some problems, is doing brilliantly.

I like to think he will do whatever he can, whenever he can. He is getting to the milestones, just in his own time grin. And each one is celebrated for the massive acheivement that it is for him.

Nobody knows what the future holds - for anyone, so enjoy your little boy for the wonder that he is.

Reading this has really made my day x

vjg13 Sun 11-Oct-09 11:18:58

Congratulations on your new little boy. Wishing you happiness and love smile

Psychotrace2 Sun 11-Oct-09 12:47:19

Congratulations!! ((hugs to both of you

BobbingForPeachys Sun 11-Oct-09 13:18:42

Congrats and welcome to a much loved baby boy. You have, I hope, much laughter ahead.

wuglet Sun 11-Oct-09 13:21:03

So pleased to read this having followed your original thread.

Wishing you all the best for the future.

janess404 Sun 11-Oct-09 13:34:09

Good luck for the future may you have many happy moments

twirlymum Sun 11-Oct-09 13:52:51

Congratulations, cherish him and give him lots and lots of cuddles smile

thanks for update, I remember your OP too. Glad you have your beutiful son.
I know you have posted in SN because of the lovely ladies here are great, but maybe you oculd update somewhere else as well as i know people will want to know and SN doesnt show in activie convo.

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