How did you react? My dd may have a condition, scared

[Islamum]

We have been told that dd may have a very rare condition which will mean she has a very low IQ and slow development, she has some of the physical charateristics, she is 1 month old, she seems find apart from having deformed toes, but I really don't know how I feel, I feel this is affecting bonding, I love her but feel I am withdrawn from her, I will be gutted if she has this condition, called Rubenstien Tuybi (think spelling is right) she may never learn to talk, will be in nappies until 5, it just seems so bleak and I want to just enjoy her, we are waiting on a genetics appt, she may be fine, one of the markers is lots of hair, which she has, but then that runs in our family, just not sure how I feel about her, how did others cope with finding out there children have a challenging condidtion?

Hi, First of all, congratulations on the birth of your daughter! Does she have any brothers or sisters or is she your first?

The newborn period is so tiring and on top of that to hear this possibility from the medical staff must have been a real shock. I do hope that you had, and have, plenty of support from medical staff, family and friends? I don't have any direct experience to tell you about but I think everything you are feeling is probably very normal in the circumstances and have absolutely no doubt at all that you are a great mum to your little girl.

I'm sure other mums who have been in a similar situation will be along later to tell you their experiences.

When my little boy was diagnosed ASD I went through so many different feelings so I know what you are going through Islamum. But now my husband says that even if he had a magic wand and could take the autism away, he wouldn't - as it is so much a part of who our son is. I'm not sure I would quite agree, but I do know that the love I feel for this child must be how a tigress feels for her wounded cub - it's almost a stronger love as you want to protect him from the world and my love for him has a fierceness that I don't get for my (also much - loved normally functioning child). I know this may not help, but I think you are probably in some form of shock or limboland at the moment, so don't beat yourself up about the bonding - that will come. And anyway they told me my son had an IQ of 49 (which is very low) and yet now he is learning to talk, and count, and all sorts of stuff. He was toilet trained before most of his NF peers, although it took a lot of effort and time, so don't give up on any of it. We use a sort of behavioural therapy called ABA, which might help - but it's too early for that. All she needs now is food and warmth and love, even if you have to fake it for a while during this very tough and shocking period of both your lives. Big hugs.

Hi Islamum. Congratulations on the birth of your daughter. My daughter was brain damaged at birth and we were told she wouldn't live and if she did she would be a deaf and blind vegetable (his actual words). Its like being torn apart because suddenly you have a baby you didn't expect and you don't have the one you wanted. You go through a grieving process for the fanatsy baby that is very painful and its not unusual to draw away from the one you have. The diagnosis kinda covers up your baby and gets in the way of you seeing her. But she's still a little baby and she needs what every baby needs even though you are going through this painful process.
Also, any doc will give you worse case scenario and with Rubenstein-taybi there is a range. The docs gave me this awful scenario with my daughter rather than just saying that with cerebral palsy they don't know, every child is an individual. My daughter is now 3 and a half. She can't walk or talk (or sit or hold her head up or use her arms) and she will be in nappies for ever and she has seizures but she is the light of my life. She makes me laugh every day (and yes, i have cried buckets too) and I wouldn't be without her for one second. The love came first when I thought she might die then the acceptance of how she is came slowly and I did go through anger, resentment of those with 'normal' babies, anger at staring and what have you. I think we all do, whatever the condition.
I don't know much about the disorder but sat and read several of the stories here and many of the children learn makaton, some talk, others communicate in varying ways.
If she does have this it will be challenging and you will meet new people, amazing poeple, horrid poeple but it will never be dull.
I would of course, like to wave a wand and take away my daughters severe cerebral palsy but not because I'm frightenend of it anymore but I hurt that she wont run across a beach or play with her own toys but its just part of who she is now.
I don't know if my waffling helps at all. If someone had told me in that first month I'd reach acceptance I'd probably have punched them one because I was in my own private hell of despair. But you do come out, your daughter is a beautiful baby and things are rarely as bleak as you think they will be.
Where in the country are you, SN support groups can really help.

Big hugs.It is hard enough having a new baby without the additional demands of SN.

What you are feeling is normal.My own dd has a global delay (Now 2 and unable to walk,or talk).When I first saw the paed I felt as if the world had crumbled.Now a few months on I feel that although she will never be "normal" she is definitely her own little person.I am lucky in that she can crawl (a recent development yay) and bumshuffle,and make her needs known by pointing or shreiking.She has a fab sense of humour and can giggle hugely at her brother,her own burps and farts ,and peekaboo.She can get furiously angry,and has been known to wallop her long suffering bro in the face if she doesn't get her own way!!!

Re the talking,its early for you I know,but even if your dd cannot gain speech there are many communication methods.dd is (very slowly) doing Makaton signing,and we get the very marvellous Portage scheme,and lots of help from health professionals.

There may be a support group out there for your dd condition too.Mumsnet has been a great help to me.

The love will come,it is still early days.I think as NMC says the docs tend to give a "worst case scenario".At a month it is impossible to predict the future.Wishing you and your dd lots of love.

Hi Islamum

My dd is only 5 months and has cp and can't see. Probably pretty much where you are at the moment but would definitely agree that sn groups really help-I feel less alone and have met some really nice people who have helped me see there is light at the end of the tunnel-even if I can't see it yet! And more importantely my little girl loves going too! Take care.

Hi Islamum,

My dd is now 4, but I remember what it was like going to the genetics appointments, having tests and watching as my baby was passed around from pillar to post in the early days. When dd was a couple of days old, I screamed at the roomful of medical students and consultants to get out because both myself and dd had just had enough.

I felt that this affected how I bonded with my dd, but this came a little later when I'd adjusted to what they were telling me. I think it helped when we had the genetic test results back, and had a better idea of what we were dealing with.

Genetic conditions can be so hugely variable that although there is a chance that your dd may not do certain things, there is also a chance that she could manage to do them.

As the others have said, support groups do help. And there's always us on here too.

How did I react? Badly.

Post-diagnosis (the initial diagnosis, which in retrospect was trivial compared to the full list we now have) I just shut in on myself. I have no photos of her for about 3 months because I couldn't bear to take a picture of my "disabled" baby.

I'd agree get hold of some sort of support group. I never managed this and it's made things sooooo much harder for me. It's not so much for the tea and sympathy, but mums of babies need people to talk to or they go bonkers - and it is easier to do this with other folk in the same boat.

Thank you for your messages, I still have no idea when we will find out, when i'm tired it gets to me, on better days i manage t put it out of my mind. I feel that i'm bracing myself for battle, if i get too soppy over her i won't have the strength to fight fo her, does that make any sense?

if you mean soppy by loving her to bits then that gives you strength because getting services (and I'm guessing SALT and portage) can be a battle, as can statementing and schools.
The hospital switchboard people recognise my voice now, as do the LEA. I am officially a 'nuisance' but I do it all to get DD what she is entitled too and what she needs. Wheelchair services being my particular rant.

I mean Ifeel that if I love her too much I'll fall apart when the going gets tough, which is daft i know. At the moment she is a normal baby with funny feet - I'm trying to just enjoy her, waiting for diagnosis is a blessing, and a challenge, we don't know when we will fnd out one way or the other dh has dismissed the idea completely, i don't know whaat to think, but am grateful that if she is rts she is eating well and thriving which it seems many rts babies struggle with. She smiled at dh this morning, I guess I just need to enjoy that smile and worry about the future later -

you will cope. When we left hospital with dd we knew she had brain damage. We didn't know how it would manifest and were told the first 3 months are the honeymoon period where dd would be like any other baby.
It was hard doing 'nromal' things like baby groups with this cloud hanging over us, unable to talk about the future.
And they were right. Exactly at 3 months of age the seizures started and we were thrown into the world of infantile spasms follwed swiflty but finding out just how phyiscally disabled she was going to be. Now we are waiting to see if the latest round of seizures (lennox-gastaut syndrome) have taken away her intellect. The treatment made her cerebral palsy worse and she can no longer hold up her head. Each time you think you can't take one more thing. But you do.
2 weeks ago we found out dd has to have teeth out as her baby teeth have decay (common in CP) and it really was the straw that broke the camels back, after all she has been through. I had 2 days of hysteria but here I am again, carrying on. You just do and you will too.

so sorry you are going through so much needmorecoffee, I guess picking up the pieces and carrying on is the only choice. I guess I just thought that these things happened to other people, I feel so unprepared. We still have the hope that she dosent have this syndrome, she might just have funny toes, no idea when we will find out or what the future holds, but I guess no one has a crystal ball

Hi Islamum...i wanted to jump in here if I may. I have a 2 yr old ds with Williams syndrome he was dx at 8 months after he started having seziures at 5 months... I knew something wasnt'right' fromthe moment he was born though, mother intuition, still that didnt prepare for the train than smacked me the day the seizures started and my fears were confirmed. He we are 2 years on and some days Im not quite sure how Ive gotten here in one piece but I have.

I certainly went through the whole grieving process, well- every stage except denial I never went through that. With me it mainly manifested itself in anger but I worked through it and the anger and the pain got less with time...my bads days now are fewer between. I still have 'why us' days and I feel sad when I see other 2 year olds running around,but I would not be without my ds for one second, he amazes me and his family adore him esp my dad, he has brought out a side in my dad that I never knew exisited.

Enjoy your darling dd and you can never love her too much, you will find the strength you never even knew you had at times when it comes to fight her corner. Talk to other mums of SN kids, it heps to have someone that trues understands what your going through and youll find so much knowledge and support on here its amaxing.

I know its hard but try not to let this overcloud you enjoying your dd, she is a beautiful little girl first who may just have some particular difficulties later on.

Keep talking though...it realy helps x

I think Louro said the important thing. Keep talking. Wish I'd known about MN 3 years ago but I was all alone.
Even if you want to say what you might think is trivial. Its not trivial if its bothering you.