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


  1. My heart goes out to you both.
    What i do know is your baby will know nothing but love and tenderness from the day he/she is born.
    May god give you the strength to help you and your baby through this ..
    Hugs to you all.

  2. Shelli, My heart goes out to you.
    My friends have recently had a baby with Spina Bifida, and Ive seen the heartbreak it caused them throughout the pregnancy, so much unknowing until the birth. I will not pretend to "understand" what you are going thorough (Im not a mum at all) but I will offer my love and prayers for you and your family xx

  3. I have read this post through tears. Shelly you are an incredible lady who's spirit inspires so many people. Sending you all lots of love and support.

  4. Hiya. Yours is the first blog I have read for a long time, I am in floods of tears. I am so sorry things are looking so bleak for you, but it is obvious that you all have a great capacity for love. This baby may bring great sorrow and heartache, but all that will be cancelled out by the massive amounts of love from you all for baby and each other. My heart, thoughts and best wishes go out to your whole family - it can only make you all stronger. every moment of any childs life is precious. My thoughts are with you all.

  5. To All Bobbins I must express my deepest feeling on your recent & unfortunate news,I also understand wht people would sau those things, but being a father of 5 I can't agree with any termination of a baby,especially when they are part developed & already has beating heart, but different situations can change anyones mind, I beleive that being positive is the only way to overcome the initial shock & will be difficult for the older siblings too!!
    I too can relate to the Spina Bifida, as 37years ago my parents lost my sister with this & had to decide if they were to try again or not........And I am the positive side!!
    Wishing you all the best & sincerely hope for a bright future for you all #hugerespect - John

  6. AWWWWWWW michelle i shed many a tear, my heart goes out to u all u are so brave +supportive of each other,ur such a special family,ur baby scans look perfect in everyway so no matter what i know u will love +cherish this little baby,some people simply worry WHAT SEX THE BABY IS ???? u have so much more to deal but i know u will pull through together as a family.i loved reading ur special story +can't wait for the rest of it.BIG HUGS +KISSES SARAH XX

  7. I have no words...only 2 arms and a very very big hug

  8. Oh Shelly, my thoughts are with you and your lovely family. Let us hope for the best possible outcome for your precious baby. I was once told only very loving and generous people are gifted with special babies. And I think God did well, when he chose a family for this little person.

    Love to you all, I wish you the best and hope you can hold on to the highs this journey will bring, to help you when you are down.

    My thoughts are with you all.
    Fiona xxx

  9. An incredibly brave blog from an incredibly strong lady. Your baby is so lucky to have you all. Stay positive and remember to lean on other people too.

    Dottie x

  10. Sally Howell-Bewsey30 November 2011 at 07:16

    Dear All
    I dont know you I have never met you but the love, warmth, courage and positivity you have truly makes you a very special person and family.None of us truly has answers as to why these heartbreaking things happen, but for what ever reason Shellie you and your lovely family have been chosen to welcome this special little one into your lives and hearts. Thinking of you! xxxxxx

  11. Shelli,
    My heart goes out to you and your family. This must be so hard for you. Every life is precious and you are all absolutely amazing. Baby Bobbins will be adorable and is going to have the most loving family. Sending you hugs and lots of love to baby.
    Ipshita xx

  12. No words but lots of thoughts and prayers with you and your family over the coming months and years. A very special mummy and a very loved baby.

  13. Sending far-away hugs and loads of love.

  14. Having my son at the age of 46, I was very aware of potential risks. I was lucky that he was born healthy and growing strong and beautiful. My heart goes out to you and your precious baby xx

  15. hiya Shelly :-) You are really brave posting this and I am sure it will be helpful for so many :-) If your baby makes it through all of his or her ordeals they are going to be so lucky to have you as their mum :-) You are strong and I am sure baby bobs will be the same :-) I am really keeping everything crossed for you all. Love and hugs Andie x x x

  16. Shelly, my heart hurts for you. I have been following your pregnancy from the moment you announced it. You have a wonderful life within you, loved beyond imagination unbeknownst to what life may bring other than love & family when baby arrives safely into this world. True, there will be tears & challenges ahead but I know your love will not falter. All I can say & pray for is that baby is as strong as you & the family. I also know that every precious moment with baby will be treasured. Every second of a new life is a blessing & what does not kill us makes us stronger. Our prayers for the safe arrival of baby & our thoughts & best wishes to you all at this time.x

  17. My prayers and thoughts are with you and your family as you try and come to terms with the changes that this baby will bring to your lives. I can't pretend I know what you are going through but I read this once and I hope it will help you.

    "Make the best decision you can with the information you have at that time. At that time is the critical part."

    This is a quote from the most devastating and inspiring true story I have ever read. (Hannah's Gift)

    Stay strong, together you can get through anything xxx

  18. Honey there are no words I can find that don't sound lame. I cannot imagine how I would feel in your shoes but want to send your my thoughts and love xx

  19. Thinking of you all, words seem to fail me. You will be in my prayers.

    keep strong together xxxx

  20. Fantastic post and you are a very touching family, it is lovely to hear how supportive you all are.
    Now I have damaged spine and a tissue disorder so not in great physical condition, Grayson is now 3 I manage to lift him as he is my son and I push through, you will manage, like Grayson your LO will be entitled to the fantastic OT support system we have in this country, there is so much equipment to make the everyday possible.
    Grayson has brain damage, this is a terrfying statement, I shall never forget the day we were told, when we told our family some of them hugged us, some questioned, some supported, 2 even puked but nearly all cried, you have to cry its how we cope with feelings. Mild Brain damage is more common than anyone realises, it is possible to cope with and alters everybody in different ways.
    One thing I can tell is that your little family will care and love your child no matter what, will it be easy no, will it tear you apart some days but other days you will smile, it will change you.
    I have met children with Spina, its a journey but not the end, from my own experience doctors give worse case scenercio they have to, so be positive. xxx

  21. Having known you on here since you started blogging, I've read & shared so much of your ups and downs. You have shared stories of your own disability and how you had 'so' much support and overcome and risen above so much, to have a fabulous life with your wonderful family. You know I have my own disability that, although not as bad as yours has been is going to get progressively worse before it gets better ... And O'Pops has cerebral palsy & will always need a wheelchair, help with feeding, dressing, toile ting, etc.
    But Shelli - you have a great life! I love my life! and O'Pops (now 11) also is a happy boy, in mainstream school, with lots of friends. He has a season ticket for his favourite football team (Blackburn Rovers) & plays wheelchair football in a team. He has a great life!
    I am thinking of you and will be here if you need support.

  22. This is so touching - I came across your blog via twitter just looking for xmas gift ideas but Ive left with a lot more.
    you sound like you and your family are coping well.

    I wish you the best X