thank u but now getting worried again...

[mummy2bsoon]

hiya, i first posted on here under the name of umm.fulaan, just after my 20week scan, when i found out my baby had sum problems and an di need support, i found a great deal of support and comfort from everyone on here, and answering all my silly questions, thank u MNetters!

but as d-day approaches, im 37weeks on wednesday, im remembering all the problems with my baby, kidney problem, talipes, growth and the possibility of my baby having downs syndrome...

i blocked it out for 17 weeks, but now the thoughts are back in my mind... any ideas of how to cope? im scared and worried about my baby. i didnt take an amino, becoz it wudnt make a difference to us... but now i jsu wana b prepared...

plus, no1 knows any of the problems with the baby, and im worried about rude comments i may get, im already defensive over bubs...

sighs

its natural for you to feel protectve about your baby already. Its our job as parents! I hope your are geting enough support from your midwife, health professionals, family and friends but if you are not you must ask for it. Take care and keep posting ... there are losts of moms on here who have been through what you are going through and can offer more practical advice xx

thank u reban...

nice to see you again, I remember your earlier threads. DS special needs didn't become apparently till he was over 2, so I've not really been in your position. Like reban I hope you are getting some help from professionals and other people in your life - can you ask the midwife what is likely to happen after the birth re:testing for kidneys problems, any treatment for the baby etc? with the talipes, I don't think my friend's DD (who had quite bad bilaterial talipes) had any treatment for the first month or two, so on that front I imagine there won't be much happening straightaway. I imagine they may want to check the kidneys/do a scan early on, so within the first week or two.

hope all goes well with the baby, and you can enjoy the birth and newborn period.

best wishes

the baby will need a kidney operation at 3 months, and the talipes will be treated after the 2nd week of the baby being born, provided the hospital actually get back to me...

i know a doctor will at there at birth, to assess my baby...

im getting support, but i feel so lonely, dh is a darling, he is very good and supportive, but i dont think he fully understands the problem, he keeps saying wait until the baby is born, people cn get things wrong...

inlaws- well what can i say they are inlaws...

my family is really supportive...

i just need to know now... its been so long...

Hi Umm fulaan, didn't realise from our antenatal thread that you were having such worries, so sorry to hear of your concerns for your baby.

I have no personal experience of your situation to share but a friend whose daughter has cerebral palsy and some other unrelated physical difficulties has said that she wishes now (her daughter is nearly 2) that she had cherished her little girl for the baby that she was, not a "set of problems" in a baby's body. Hope that makes sense!

Disneystar on our thread has some first hand experience of dealing with these concerns, the little boy she is expecting any time now has skull problems and I think one of her other sons has a similar condition, if you pop over to the July thread I bet she'd have some experience to share.

Best wishes to you, I'm 38 weeks tomorrow and although I haven't had the pregnancy concerns you have, I empathise with anyone who is nearing the end of pg cos it's a time filled with such mixed emotions and physical demands that even without worries like yours it can be a stressful time. Good luck xx

makes perfect sense!

thank u

Sorry to hear about your problems, I know how much of a stressful time full of worry it can be and how the future can often seem so daunting when facing the unknown.

My DS2 was born 9 months ago, he had both Downs Syndrome, talipes and a few other conditions, none of which we were unaware of before birth.

Although it came as such a shock and we too had worries about how we were going to cope (especially as DS1 is severely autistic), those worries soon disappeared and life wasn't quite so scary.

I can't offer any advice on kidney problems, but our experience of talipes has been a very positive one. DS2 was started on the ponseti method at 2 weeks old, had casts for 10 weeks before his tenotomy and casts for a futher 2 weeks, before he was in his boots and bars. He is now only in his boots and bars at night and for naps and looking at his feet you would never realise there was anything ever wrong, even though his was quite a severe case to begin with.

Infact looking back now at all the worry and concern we and others (my MIL thought he would never be able to crawl/walk etc) had over the talipes, it is hard to believe that they were fixed quite so easily, I often think of the ponseti method as a miracle cure, if ever there was such a thing!

If you need to chat, rant or anything else, I am always around.

Best of luck.

Hi mummy2b. My DD is nearly 2 and we were first alerted to problems (too much fluid on the brain, but no overall diagnosis) at the 20-week scan.
Nobody could predict what she would be like at birth (whether she would be able to breathe independently, whether any of her organs would work, etc)--so, as in your case, a paed was standing by at the birth. What we found VERY helpful was (a) talking to a supportive midwife in the fetal medicine unit about how scared I was feeling and (b) having a tour of the special care baby unit before she was born, so it didn't seem such a scary, unfamiliar place when she was finally admitted there on day 3. It didn't take the worry away completely but it definitely helped. DD is now healthy and although she has developmental issues, she's perfect to me and is doing things her way in her own time.
I wish you all the best and am very happy to talk if you would find it helpful.

I have no advice but just wanted to offer support.

LeonieD: I actually had 4 scans with DS2, as follows:

10 weeks - early dating, measurements, etc.

20 weeks - standard scan for anomalies.

29 weeks - for measurements and growth because I was so big and they suspected GD (which was not the case).

36 weeks - again to check the growth and because he was breach and they were considering ECV and were worried he would get too big for this (however he turned and the ECV wasn't needed).

None of DS2's problems were picked up at any of these scans, not even the talipes and no further tests were suggested.

Although this could of been because I had already made it clear very early on that myself and DH would not want an ammnio or any other tests.

Mummy2bsoon: I should of mentioned earlier that the charity 'steps' was a great resource for us when researching talipes, the website is www.steps-charity.org.uk

They have a great forum on there, with lots of knowledgable people ready to share their experiences and offer support and advice if needed.

i really know how you feel honestly

im having my baby in 2 weeks im having an induction

ive known since 22 weeks for definate my baby has heart problems and fused skull bones he is facing major surgery to

i to have blocked it out and recently began shuttin my doula and dh out refusing for them to at the birth

why?
because i am scared of what im going to think what im going to do
i feel guilty putting my unborn baby through operations when i had a choice

but you know what we have given our babys a life yes they might need some help but they have got 2 best ever mummies to do that
we are defensive over them already protective also

i have been told my LO will have a facial disfigurement at birth
but i know when i hold him in my arms he is going to be the most beautiful baby in the world to me

please feel free to talk to me if you want to
even though i have my dh im alone to
right now its a scary place to be waiting and waiting
but enjoy the rest of your pregnancy this is your baby your special moment
big hugs to you xxxx

thanx guys for the support...
disney, yeh im feeling like u, very alone...very scared...it now all seems real...

thank u for the steps link, i am on there already, have been reading on there about kids... been reading about downs...

i dont have any of the numbers at hand, maybe that will make it more real.

and now im annoyed, as oen hospital hasnt tranfered me to another, and that could delay the treatment fore talipes...

hugs

thanx guys for the support...
disney, yeh im feeling like u, very alone...very scared...it now all seems real...

thank u for the steps link, i am on there already, have been reading on there about kids... been reading about downs...

i dont have any of the numbers at hand, maybe that will make it more real.

and now im annoyed, as oen hospital hasnt tranfered me to another, and that could delay the treatment fore talipes...

hugs

Hi try not to panic about the talipes treatment. It's not critical that treatment is started right away, children over a year old have started ponseti treatment and have very sussessful results. You could try and e-mail the ortho consultant directly if you know a name. My DS2 was born with bilateral talipes and thiss is how I made contactt witth the consultant whilst I was still pregnant and his first casts were put on at 6 days old.

Are you on the STEPS forum? I'm shadow on there
x

im first time mum on there....

thank u for all the support, i shall be calling on u all soon...

disneystar (hugs)