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

Sleepsox, we had the 'helpful' relatives too. I don't think they meant to add to our stress, I guess they were coming to terms with the situation too, in their own (very unhelpful!) way.

It is a waiting game. We just wanted someone to tell us what would happen with dd1. And then, when we were given the worst case scenario by a Neonatal Consultant we wished we had never asked! I suppose that's what makes me so proud of all the things dd1 does achieve. We were asked to take part in a Radio 4 programme in the early summer, and they recorded her speaking, and then 'clomping' down our hallway saying 'look, I am walking!' sounding so, so proud of herself. The programme ended with just the sound of her laughing and giggling as I helped her bounce on a tiny exercise trampoline. I had friends from school phoning me in tears afterwards, saying they never realised what a journey she had been on, and, in her own way, just how far she had come. I cried just listening to her. I felt so proud. Our little ones are all amazing.

She is at a Special School, which is fantastic. She is not like her mainstream peers. She walks 10 steps before collapsing in a heap. Her speech is on a par with a child 4/5 years younger. She is my clever, funny, special, wonderful dd1, who was not expected to survive, and who has enriched our lives so very, very much. We just love her so much.

Love to you and your gorgeous baby boy x

thank you sleepy xxxx

Thanks for your posts Riven and Pheasant. They do make me realise that things will calm down and we will settle into our lives and will be able to accept the situation better.

I really am totally besotted with my son, but can't help gazing at him when he's sleeping, wondering what his future will be like. I know parents of 'normal'(I hate that word, as normal is such a relative term, but can't think of a different one to use) babies do this too, but I bet they're not wondering about the basics like, will he walk? will he talk? Will he ever be toilet trained?

Hi Sleepy and congratulations on your new son. I'm not sure if you want yet another story of a child who survived a dreadful start in life, but...

I have a daughter, now three, who has ventriculomegaly--too much fluid where there should be brain matter. I was told she may not survive, then later told there was no knowing whether she was going to be OK, as there was no apparent reason why the excess fluid had occurred.

DD struggled to keep any milk down at first so we spent her first month in SCBU, watching the premature babies grow up and graduate to the real world. And once we were home ourselves and getting used to the many appointments she had to keep, from various child development therapists, I found myself increasingly isolated. Not physicallyI saw people every daybut psychologically, because whilst the other new mums I knew were worried about stuf like sleeping though the night, colds, and whether to take the whole family camping, I was obsessed with whether DD would make it to her first half birthday.

We still don't have a diagnosis for DD and we have no idea what her future holds. But she eats well, has a few meaningful words, and loves to jump around on a trampoline. She loves life and is the smiliest, happiest little girl. The past three years have been a blur and at times our relationships have been strained almost to breaking point. But we are strong.

Everyone deals with things differently. Some people are in denial, refusing to contemplate that there is anything wrong, because they don't know how to deal with their own feelings. Some people want to leave it all to the experts. My way of coping was to get in control. I made sure i knew what every health professional was doing for DD and why. I became my own keyworker, coordiating appointments, arranging for joint visits, meetings and assessments. I came on here a lot, too, although I didn't post very often. It made me feel less alone. Eventually I met other mothers in RL who have children with SN and I am now a bit of a parent activist. It's weird what a trip to SN world can do for you.

Arabica, your daughter's story is very moving. She is lucky to have you as a mum, in fact all the children on this board are lucky to have you all as mums.

I'm a bit of an organiser, so can see myself making sure everyone is towing the line, when I get a bit more confident and together in myself. Atm I'm a bit of a nervous wreck.

Riven- I just looked at the photos of your DD- she's gorgeous- I love her beautiful hair.

Hi Sleepy
Thinking of you and your beautiful son.
He couldn`t have a more caring and devoted mum.

HI sleepy - well done and welcome to SN board. You will find it really supportive on here. It has been a rock to me. Hope your DS continues to confound the DRs. My top tip would be to live day to day. Don't worry about the future - you can drive yourself mad that way. Take it steady :-)

congrats on the birth of your beautiful baby boy.
i too had my son prematurely at 26 weeks & he has hydrocephalus, he had to get a shunt when he was around a month old. docs told me not to expect my son to live & if he did he would be severely brain damaged. he did survive & is now 6 years old. although he does have cerebral palsy, but he has never had anymore problems due to the hydrocephalus & the shunt has always worked fine. the doctors will always give you the worst possible prognosis, but that way, everything your child achieves is always a bonus. i really wish you & your beautiful baby boy the best of luck for the future.

Thanks everyone