Hi all

Been looking at this forum for a couple of weeks now since Daisy was born but haven't felt able to post until now.

Basically I had a completely 'normal' pregnancy until the night Daisy was born. At that point, following three examinations and a scan it was discovered she was breech (I'd been told head down all the way!) Cue emergency c-section at which point we got our second shock - Daisy has Spina Bifida, her back was open and she was to be transferred to Birmingham Childrens Hospital so they could operate to close it. In the space of 12 hours we went from expecting a normal, healthy baby to being told she'd probably never walk, would have bladder and bowel issues and potentially brain issues too.

Daisy was transferred that night and had an incredibly successful operation the next day to close. We then spent a frantic week back and forth to the hospital but thankfully the news kept getting more and more positive each day. We now have no reason to believe Daisy won't walk as she has fantastic movement in both legs. Her initial renal scans proved fine too although she'll have follow up ones in the coming months. She does have Hydrocephalus and Chiari Malformation though and last week the consultant told us what we were dreading - that subject to an MRI in the next month she'll probably need a shunt fitting. I know it's not the end of the world but you somehow go into these appointments hoping beyond hope that they'll tell you it's all 'gone away' even though you know that won't happen.

Daisy's condition was undiagnosed. I wasn't offered the triple test, nor was it picked up on the scans. I took all my folic acid before she was conceived and up to 12 weeks so have spent a lot of time over the last weeks wondering 'why us' and 'how did it happen?' It's been tough and I've done a lot of crying too but I think I'm coming out the other end now. At the end of the day we've got a beautiful little girl who's obviously here for a reason and I'm determined to do everything I can to make sure she has the best life possible.

Sorry for the long introduction but just wanted to say 'hello' really.

xx

Hiya.
What a rollarcoaster of emotions you've been on the last few weeks. I don't have any experience of the problems your daughter has but there are people on here who do and i'm sure they'd be able to offer you advice.
Our daughter Niamh was diagnosed with Pierre Robin Sequence at 2 days old, so i can understand how you felt. Niamhs problems can't be detected on a scan so i just presumed everything would be ok. I've cried buckets and have asked the same questions, why us, why niamh and to be honest i blame myself even though i know it has nothing to do with anything that i've done.
I did come to terms with things after a few weeks but did struggle a few weeks ago when all the emotions came flooding back.

Sending you and Daisy lots of hugs x

My DS2 has just turned 4. He has mild-moderate right sided hemiplegia (cerebral palsy). Happened as a result of his birth but was not diagnosed till he was 8 months old.

The first 3 years are hard. Nobody can tell you what is going to happen. But you get through them one tiny milestone at a time.

And each one of those milestones is more amazing than you can ever imagine.

OH I am so sorry i didnt see thing before!

My son has spina bifida and Hydro also. he is just turning one now.I knew at 20 weeks. How are things now?

If you want to talk I am here - I even have a support group for parents of children with Sb & hydro.

Hey hun. My LO also has SB, chiari malformation and hydrocephalus. Bladder and bowel issues are a MASSIVE part of any child with SB's life. Even as mild as some children get it (those who can walk, have full motion and reflexes etc) can have big, big issues with their bladder or bowels.

My daughter's SB is particularly severe - she is paralysed from around her bellybutton down. I am fairly certain that she will never walk. I love her with all my heart - and I love her more because she's special. I wouldn't change her for the world.