Wednesday, 30 November 2011

Our gorgeous baby has Spina Bifida & risk of trisomy13, downs syndrome, edwards syndrome.

Ive been wanting to blog for ages, but when you read this you'll know why I haven't ................................

Being just 40 in September meant I'm at high risk of having a baby with downs, we decided not to have the test as it could cause miscarriage and its nearly a year since that happened, So both hubby & I said no, its not something we wanted to go through ever again. The hospital said we can send you to the RVI at Newcastle to check baby's heart & make sure everythings ok just by a scan, so at 16 weeks we agreed and saw a really lovely heart specialist ----- you'll be pleased to know babybobbins heart is fabulous, PHEW ! and completely relaxed such a weight of our minds & so happy baby's heart is ok, we even asked them do you need to see us again ?? NOOOOoooo just carry on with your scans as normal at Whitehaven hospital we are happy not to see you again as everything looks fine.

(researched all about downs so felt happy knowing we had looked into everything)

The morning of our 20 weeks scan bit of rush, but hubby amazing as ever & even had our little snack bag organised too plus my water bottle !! off we go laughing & joking as we do, thinking of names !! we where really excited as 20 weeks scan you can also find out the sex of baby too !!

Into the scan room all smiles & a lovely lady that was very chatty & then suddenly stopped being chatty, my stomach just turned I held hubby's hand really tight, we knew something was seriously wrong, I kept calm and asked what was wrong, she said I need to get a second person to have alook, everything looked ok baby was kicking & moving about I could see the heart beat !! then she said its serious and baby has SPINA BIFIDA, we need you to wait and see a doctor now, I just burst into tears, what the hell was spina bifida !! all I could think about was I not research it I knew it had something to do with the spina but that's it ! Hubby face tears and held me to tight.

We waited to see the doctor, he explained what spina bifida was and said we have to see a specialist now back at the RVI to see how serious it is, I did ask for a leaflet which had websites on so we could google when we got back, the doctor said if you google about it you will scare yourselves ! (nice) they rang the RVI while we waited and managed to get us seen within a couple of days I just wanted to go there and then !! 11/11/11 at 11O'clock wont forget that date in a hurry.

Telling our girls was heart breaking we had lots of questions so decided to make a list of everything we could think of, In the couple of days we had to wait hubby took the time off work, all we could do was support each other & our girls this was & still is the only thing that matters, we had afew of people, family, friends asking horrendous questions & saying the most stupid things

Maybe a miscarriage would be a god send ??
How will you cope if you need another knee, elbow, etc ??
How will you lift baby when its older ??
What quality of will it have ??
Have you thought this through ??
Your disabled how will you manage ??

And then our daughter comes home from school and says shes googled spina bifida today and seen a baby with half a head, we are doing all about "Can you play god" in religious studies or do you terminate a disabled baby.  This was far to much for her, didn't even know she was doing this either, we rang the school and put them in the picture --- they have been amazing & very supporting too !!

11/11/11 at the RVI at 11 O'clock well just after my 2mins. Our specialist chatted with us first before the scan we said we just need to know how serious this is, (also had a medical student with him & asked if it was OK, of course as everyone has to learn it is 1 in every 1000)

What we know :-
1. Baby has spina bifida 11th & 12 vertebrae & will need an operation soon after baby's born to close everything up due to infection, with it being high up baby will be paralysed from the chest down.
2. Baby may still have downs but having refused and testing due to risk of miscarriage we wont know until baby's born.
3. Baby also has fluid on the back of the brain & may have mild brain damage & also may have to have a shunt put in, this also could then lead to further brain damage if infection or complications happen.
4. Baby has also a 2% risk of having chromosome 18 Edward syndrome this is fatal.
5. Baby has also a 2% risk of having chromosome 13 Patau syndrome this is also fatal.

knowing what we know we will always try and stay very positive everyday & do everything we can as a family.

Love Bobbins Family xxxxxxxxxxxxxxx