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Caroline5 Fri 11-Oct-02 22:18:55

Some of you may have read my posts about our dd, Anna. She is nearly 17 months old, but is not yet crawling, walking, pulling up and is saying only one or two words. She has a very small head, which she had before birth and which is still off the bottom of the centile chart. She had a development review by the health visitor which placed her some months below where she should be for her age

On Tuesday, we saw the consultant paediatrician locally here again. To our great sadness, he told us that our dd was basically in some way brain-damaged because her head has not grown properly.

We may never find out an exact cause, although they are going to do lots of tests (genetic tests, brain scan, EEG, blood tests). Our dd will receive therapy through a system called Portage, to try to help her to learn to move, speak etc. Does anyone have experience of this?

While we knew something was not right with her, we still clung to hope that she was just developing more slowly than average. Dh and I are both very tearful right now, almost going through a grieving process for what might have been. I don't feel angry, just very, very sad. It is hard not to question whether I did something wrong, did I not feed her enough or eat the wrong thing during pregnancy? We just love her so much.

It is hard not knowing what the future holds - how disabled will she be, what will life be like for her?

Sorry if this is very depressing, but it just helps a bit to write it down. Thanks for listening.

thumper Fri 11-Oct-02 22:32:28

Oh Caroline, no real help to give you, but your post really touched me and wishing you all the best. It is NOT your fault, it is just so awful that these things happen. But you sound like a lovely mum and dad who will give your dd all the love and support you can. This does not mean the end of the world, far from it, you have a beautiful daughter, enjoy her and at the same time make sure you get all the advice and support you possibly can to move forward.

Lucy123 Fri 11-Oct-02 22:35:46

Caroline5 - how very distressing for you.

The only thing I can think of to say that may be of some comfort is that, well, although she may not do everything "normal" children can, she will still be able to do many things, probably including some that other children can't do. She will also have her own personality and will almost definately give you as much joy as any other child could.

Also don't blame yourself. You probably didn't live in a cushion-studded oxygen tank eating only organic himalayan vegetables for your entire pregnancy but then neither did the rest of us. These things just aren't fair.

best wishes.

sobernow Sat 12-Oct-02 00:06:57

Message withdrawn at poster's request.

threeangels Sat 12-Oct-02 00:59:57

Hello Caroline5 - I wish I knew what to say to make you feel a little better. I would like to say how sad I am for what you and your dh are going through. Just remember that no matter what happens in the future your daughter is and always will be just as precious as can be. I know you already know this because you sound like a loving, caring mother and father to Anna. This is what most important for Anna's future whatever that involves. Please take care always. God Bless.

SoupDragon Sat 12-Oct-02 08:55:21

Cyber hugs from here too

Willow2 Sat 12-Oct-02 10:02:26

Caroline5, my heart goes out to you all. You mustn't blame yourself - these things happen for so many different reasons or none at all - and what is so obvious from your posting is that Anna couldn't be more precious to you and will undoubtedly bring you a million joys whatever the future holds.

I have no advice on what to do or where to look for more information, but if I come across anything that I think might be of interest I'll post.

Much love xx

Clarinet60 Sat 12-Oct-02 18:35:38

Caroline5, I echo lucy123's lovely message, and those of others here. She probably will be able to do things which others can't and you must not blame yourself. Sending love and prayers.

lou33 Sat 12-Oct-02 19:47:53

Caroline5 I can totally understand your situation having been there only too recently myself. My youngest had been recently diagnosed with cerebral palsy, he is not developing as he should. At the age of 19 months he has just learned to roll over and can only do the most basic commando crawl. He cannot sit unsupported and there is no point even trying to get him to stand. His right arm is stiffer than his left and his trunk has low muscle tone, as well as both legs being very stiff. As I said we thought he had been diagnosed with cerebral palsy, but after finally seeing a neurologist who specialises in cp, he has advised us that cp is the best we can hope for, and that he may in fact have a rare form of inherited spastic diplegia, which has the same symptoms as cp. The difference is that cp is non progressive so he will not deteriorate, whereas this inherited form is progressive, so he would get worse and end up in a wheelchair. I am trying to come to terms with the possibility of this becoming a reality, wondering if this is as good as it is going to be, watching him flailing around on the floor like a seal pup. SO this is a very long winded way of saying you have my support if you need it. And on the Portage front, it is an excellent form of learning through play basically. My oldest had hydrocephalus as a young child, and she had it every week, had a ball and really missed it when it stopped. Hope this helps.

sobernow Sat 12-Oct-02 19:59:09

Message withdrawn at poster's request.

anais Sat 12-Oct-02 20:34:28

I'm so sorry Caroline5. It is a difficult time. All I can do is echo what has already been said. Don't balme yourself, there is nothing you could have changed and nothing that will change because of your guilt, it's just counter-productive.

She may not be the child you had always expected but you can still help her to fulfil her own potential. Take each day as it comes and just enjoy her for what she is.

I'm sorry I can't put into words what I really mean. I wish I had the words to help. Just know that our thoughts are with you. Best wishes. XXX

Hilary Sat 12-Oct-02 21:49:48

Portage workers, from what I understand, will work closely with Anna and yourselves to assess her abilities, what she can and does do. Then I think they create a teaching programme for her, outlining what steps you will take with her to try to improve the things she can do and bring her closer to what other children her age are doing. The idea being, as I understand it, that Anna will progress best in her home, with the support of her parents. The definition of the Portage Service in my book is this;

'The Portage Service is a method of providing home-based support to parents of children with learning difficulties and disabilities. A teacher visits parents on a regular basis and provides teaching programmes for the parents to use with their child between visits.'

Hope that helps. Thinking of you lots. You obviously love Anna to bits and my guess is that she reciprocates this and she will still delight you in the same ways she always has. Praying for you.

Marina Sat 12-Oct-02 22:50:54

Caroline5, post here as often as you want about Anna. As you can already see, Mumsnetters are absolute stars at providing advice on specific issues or really helpful support when the chips are down. It's a sanity saver and I know that from recent personal experience.
As the others have said, you did not cause Anna's disabilities. Although my circumstances are different, I do know what it is like to blame yourself for something that happened to your baby - it is all part of the shock and grief you feel when things do not turn out as you expect. Knowing deep down that you did "all the right things" during pregnancy does not stop you blaming yourself when you are at a low ebb. It's normal. And it is not disloyal to the dear daughter you have now to grieve for how things might have been otherwise.
Everything that Anna achieves - by herself, with your help or with specialist intervention, will make you so proud of her; and you are already doing the very best you can for her as parents - she has your love.
I hope that the tests give you a name or definition for her condition - that can help a lot, by providing a point of reference and possibly also linking up with other families and support groups. I hope also that you get good support from the local health and social services - it sounds as though this has got off to a good start, long may it continue.
I also know what it is like to be uncertain of what the future holds, but to have to keep it all together for the sake of other family members. There are many other people on this site who have experienced similar feelings - and they will be thinking of you too. I wish you and Lou33 all the very best.

Caroline5 Sat 12-Oct-02 22:57:46

Thanks so much for all your very kind messages and support. I will try hard not to blame myself, but I guess it's just a phase you go through in the whole process of coming to terms with it.

Lou33, I haven't been on mumsnet very long, so did not know about your ds. Very sorry that you have had such difficult news, I do hope your ds has the non-progressive condition. All the best to you and thanks so much for your offer of help.

Sobernow, you asked if Anna was communicating and happy - she is a very happy child, very placid and easy-going. She has good and bad days with communication (like us all), sometimes it's difficult to make eye-contact at all, other days she's laughing and smiling.

tigermoth Sun 13-Oct-02 10:54:41

Caroline and Lou, I can't say anything that hasn't already been said in these messages but just wanted to say how moved I was to read your stories and I see how much love is there.

ScummyMummy Sun 13-Oct-02 12:00:28

Hi Caroline,
Very very sorry to hear about Anna's disability and strongly echo all the sympathy here. It's a very difficult time for parents when they find out there is serious cause for concern (I work with families with disabled children). I do agree with Marina's lovely post that it's absolutely normal to respond with grief to this news and to search for explanations.

There is some info about portage here .

I don't want to flood you with information just now but if you do ever need any help finding stuff to help Anna I'd be happy to help with that if I can. Depending on where you live you might want to look at getting support from:
Special Needs Health Visitors- when they're there and good they're very very good IME
Social Services
Health
Education Dept
Sure Start
KIDS
Contact A Family
Other voluntary organisations

Many parents find it useful to contact some kind of voluntary organisation to get a rounded picture of what services are available in their area and what support their family is entitled to-unfortunately there is rarely a statutory "One-Stop" sevice so it can be difficult to work out what services your daughter could be getting from where and many voluntary organisations are dedicated to filling this gap. If you would like to email me with details of where you live I'd be happy to ask the national branch of our organisation to send you some info if this would be helpful. You can email me at thescummyone@yahoo.co.uk.
HTH

WideWebWitch Sun 13-Oct-02 12:44:54

Caroline and Lou, all my sympathy too, please keep talking here if it helps which IME, it often does.

SueDonim Sun 13-Oct-02 14:50:35

Caroline5 and Lou33, all the wise words have been said so I just want to add that I'm thinking of you and your babies.
Sue

clucks Sun 13-Oct-02 14:57:12

Caroline and Lou,

You are assets to your children. Good luck and thinking of you.

GRMUM Sun 13-Oct-02 15:04:31

Dear Caroline5 first of all lots of love and cyber hugs to you,your dh and Anna.Now whilst you are feeling this sadness try to remember that Anna is still the gorgeous adorable daughter that you love she hasn't changed at all,what may have changed are your hopes and dreams for her.Having said that,many things will be achievable and she has the greatest support in he world to help her along the way- a family tha loves her.
I also have worked for many years with special needs children - I am a paediatric physio. but as I have lived and worked outside of the UK for many years I can't offer much up to date adviceconcerning UK.I second all the organisations that scrummymummy mentions, in addition there are several very supportive and clued up mums on mumsnet who can direct you in the right direction for any benefits.
My mother worked as a portage visitor for many years and built up some very close relationships with her familes.One family still visits my dad even though my mother died 5 years ago.From a physios point of view I think it is an excellant scheme as your assigned key worker will visit you at home and work with you and Anna on specific tasks and activities to encourage her development.She may well be able to also show you a variety of different positions for you both to use with Anna or for Anna to actually use herself, that will encourage Anna to develop to her maximum potential eg children with differing conditions need to be encouraged to sit in different ways.If your portage worker can not help with this ask to be referred to a physio. at least for a one off visit.
I am so sorry that you have to go through this.You are not to blame for anything- its a sad fact of life that these things just occur.If you ever need to talk I know that all of mumsnet is listening and wishing you love and support.As you said the hardest thing is not knowing what the future holds.That is a great unknown but you will be amazed as you go through life at the determination that Anna will show.I have seen many of "my" children achieve things that I would never have believed.
Finally a further portage site ishere
Best wishes A

GRMUM Sun 13-Oct-02 15:06:07

Sooy that link is here (i hope)

lou33 Sun 13-Oct-02 15:31:17

Thanks for all your very kind words ladies, I really wasn't trying to hijack this thread, but just to show Caroline5 that I could see how she was feeling. But can I echo Scummymummy's recommendation for KIDS. They are a fantastic charity based in west London, and did wonders with my oldest when she needed it. Contact a family didn't even bother to reply to me however so you can guess what I think about them! Caroline5 you may be able to get respite care for your daughter, to enable you to have a few hours off every week or so, so it would be worth asking your health visitor about this. Very best of luck.

Caroline5 Mon 14-Oct-02 11:58:42

Thanks again everyone for all your lovely messages and practical help and advice. I really do feel a lot better now. Will post again with any further news.

Scummymummy, thanks for the offer of info, I have e-mailed you with our address.

Batters Mon 14-Oct-02 12:43:30

Message withdrawn at poster's request.

prufrock Mon 14-Oct-02 12:51:50

Caroline and Lou - just wanted to add my sympathy.

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