My brain damaged baby- not expected to survive- Update

[sleepysox]

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

Lots of hugs to all of you!!!XX

Have been thinking about you since your original thread. Huge Congrats on your precious new son. Wishing you all the best for the future x

Congratulations on the birth of your darling son! Big hugs to you both!

Congratulations Sleepysox - that's wonderful news

I remember your OP and I am so glad you have your beautiful boy. Thanks for updating.

So glad

I can remember your original post. So lovely to hear your little boy is here. Congratulations

Congratulations on the arrival of your little boy

Thanks for all your lovely messages.

I'll try and put this update in general chat too, as I didn't realise that SN didn't come up in active convos.

In case people wanted to know what Tom's condition was- he has a missing Corpus Collosum which is the passageway between the right and left brain that the neurons use to communicate. The void is filled with water and the grey and white matter of his brain are mixed up.

Pheasant Plucker and Feeling better- I'm glad your little ones are doing so well. I hope Tom does just as well

I am trying not to worry about the future, but it's hard as I love him so much already and don't want to contemplate any unhappy futures for him and us.

Congratulations on the birth of your baby boy x

Sleepysox - my dd has a partially absent CC - happy to chat about it should you ever want to. XX

Hugs to you and Tom xx

I was thinking about you sleepysox. So glad to read yr post. Congratulations to you all

(I posted email address on yr other thread. Have namechanged since)

re worrying about the future - think its good to talk / write down all your thoughts and fears. Well it helps me work through them anyway

In the v early days, there were times I felt frustrated and helpless at the uncertain prognosis - like I was in some sort of limbo. I had to adjust to the uncertainty and normalise it in some way - like tell myself that with any baby nobody knows what is in store / what they will be like. And at least uncertainty is more preferable to professionals telling you yr child will never do this and that.. it gives some space for hope

I'm sure with the love you have you have some wonderful, happy times ahead

Good luck to you all for the future cherish each moment with him as these are the ones you will never forget I dont know you or your darling baby but my heart goes out to you both keep your chin up and give him a gentle cuudle of me xxxxxx

Huge hugs, sleepysox.

Have you found Corpal (UK support group) and the NODCC (US support group) already?

There is also a email 'listserv' run from the University of Maine which is the most wonderful source of support and information from people affected by ACC (themselves or loved ones). It is worth setting up a dedicated gmail account for this though, they chat so much!

You can join the ACC Listserve here.

Hi Sleepyfox

My heart is with you as I have gone through a very similar situation. My little boy turned 3 on Thursday, he started walking about 4 weeks ago and he has now started pointing to the biscuit tin. They have no idea what the problem is with my little boys brain but he is still at the develomental age of a 9 month old child.

I had IVF and had twins and then my little miricle came along o natural. All my children are special but my little boy was sent to us to make our lifes very special.

He is adored by everyone and he loves everyone and he never fails to amaze us.

You look after your little boy he will bring you great happiness in every little thing that he does.

xxx

Swampster- thanks for those links. I've book marked them and will have a peruse later.

KTCL thank you for sharing your story. Your son sounds like an amazing little man.

I feel blessed that my little one has survived and am also so grateful because before he was born I'd had 3 m/cs in a row and so feel very lucky to have a baby at all.

Herjazz. Limbo is exactly what I'm in atm. I'm a planner/ organiser by nature. I like to prepare for what's coming up and make sure i'm sorted, so I'm finding this situation quite difficult. Especially as it affects the long term future of my gorgeous baby. I'm trying not to get obsessed by it, but it's hard not to. YOu're right about nobody knows what's in store for their baby. I'm going to try and remember that when I get bogged down with the 'what ifs?'- usually at 4 in the morning!

much love and congratulations xxxx

some hope here my son was not supposed to be here either hes 15mths now with downs and heart disease and brain damage

he has his life saving op in under 3 weeks now , ok he cant walk talk or do much but he is doing things
have hope
have faith
you have you child and i wish you all luck and love for the future.
i live day to day i have to and boy i bless every day and enjoy my ds to the max xxxx

Congratulations, such wonderful news

Welcome to the world hugs for Tom (and well done hugs for you)

Sleepy,congratulations on your beautiful son.
We were given a diagnosis of profound brain damage after our baby suffered a massive brain haemorrhage at one weekI was devastated and heartbroken.
My worry for you is that sometimes people say oh I got that diagnosis and my son is walking or talking etc.We were told he would never do any of those things.However my sister said when she saw him for the first time if he never does anything at all he will leave the world a better place just by being here as he is so beautiful.I really hung onto those words.My son is in his twenties now and he is the best thing that ever happened to us.Yes he is in nappies and cannot feed himself.Think Ivan Cameron.And like David Cameron my dh is an academic and has got a first class degree from Oxford.He changes his nappies and baths him etc.Obviously I wish it had never happened but he is happy,enjoys his Life,and so many people love him.We have been in contact with so many wonderful people through him.Our lives have definatly been enriched.Will be thinking of you.Mumsnet is brilliant and inspiring and I so wish I had this when my son was a baby.BTW,hate to name drop but I did meet David Cameron when he was out pushing his son Ivan out in Chipping.I had a long chat with him and he was fantastic and so in love and besotted with Ivan.He clearly did adore him.

Sleepy, this time of 'limbo' will pass. For the first few months of DSs life, we were floundering. We wanted to do everything we could for him, but had no idea what to do or how to do it.

I thought we were doing OK at the time, as well as you could expect, I suppose. But when I look back we were terrified and lost.

I wish someone could have told me that in a very short time we would accept DSs condition and be in total control of his life (I'm very good at keeping his numerous doctors in line ). And that we would be comfortable and confident doing so.

I'd never have believed it though.

You will be the expert in your DS and his care. You will know what he needs better than any healthcare professional, no matter how dedicated they are.

It will happen, I promise x

How is your little one doing, sleepysox? I wanted to CAT you but my subscription just ran out.

I found this explanation of Agenesis of the Corpus Callosum useful. It was posted on the listserv by a 28 year old woman called Jane who has PACC:

"The corpus callosum is the main highway between the left & right brain lobes.

People with ACC or PACC don't have a highway - they have a series of back roads, lanes, dirt tracks, complete with speed bumps, pot holes, and 20km country detours. Its not that the message doesn't reach its destination - It will get there - eventually, you just need to hang in there and wait. Slowly, slowly, repeat repeat - you will get there :D"

Please email me if you want to chat off board - swampster at rocketmail dot com.

Jardy- my inlaws keep on torturing me with miracle stories about babies who were given the wrong diagnosis and who battled all odds and became astronauts/ prime minister etc (well, i exaggerate a bit, but you get my point!). I wish they wouldn't, as I feel I need to accept what's happened and feel grateful that I have a gorgeous little boy and celebrate him for who he is, rather than focus on what he will/ won't achieve. I'm really touched by your story of your gorgeous son, he sounds very special. It sounds like he has really enriched your life.

Disneystar- I hope your sons op goes well. I'll be thinking of you

Feeling better- it will be good when I get more knowledge and then I can be in control of what's happening, rather than be at the mercy of the doctors. They seem to rule our life atm. The care has been excellent though, we're so lucky with our paediatric team at our hopsital. All the medical staff and people at our local surgery have been fantastic.

Swampster- thanks for your post. I read the quote to DH and it does give us hope that DS will have some sort of brain function. Thanks for giving me your email.

I've just fed DS and wnat to get some sleep now, so I'll stop typing. We only managed 3 hours last night and were at the hospital for most of the day, so no chance to sleep when the baby sleeps, like the HV is always saying!