13 comments

  • Congratulations on her remission and pregnancy! As for vitamins, just a good prenatal should be fine during her pregnancy. I promise it’s not as scary as it sounds! Her babies will amaze you every single day. My little girl is 10 months old now and defying the odds by a long run!

  • Hello Samira,
    Welcome & congratulations.
    As scary as it feels and as much as you want to do something to help, there is really nothing that your daughter can do that she wouldn’t do during a typical pregnancy.
    I’m so surprised that the twins were both diagnosed with Spina Bifida at 11 weeks. That seems so early and for twins too.
    Did she have a Level 2 ultrasound? What specifics did the doctors tell her?
    We are here to help. Just let us know what we can do.
    Tina

    • Hi Tina

      Thank you so much for your reply my daughter is also profoundly deaf
      due to the chemo treatment she had and she communicates using British Sign language
      she is booked to see Neurologist next Thursday 16th Feb for another scan, I think this will be her 2nd scan at the fetal clinic

      all they have told us is there is no hope and the twins wont have any quality of life
      my daughter and her husband and myself couldn’t cope with news at the time there was a lot of tears and feeling hopeless

      I don’t know what question to ask at next appointment

      They already going down the line of suggesting termination of pregnancy and that’s when my daughter completely lost control and looked at me and said mummy I don’t want hear anymore my babies are going to stay with me

      I am going to attach the letter they gave us they printer run out of ink and I tried to enhance it as much as I could

      Kind Regards
      Samira

      • Hi Samira,
        I’m so sorry for all that you and your daughter have been through.

        Please tell her that there is hope.

        The next question to ask your OB is to please refer you to a pediatric neurosurgeon.

        And ask them to kindly not bring up termination again.

        I don’t know why these OB doctors feel so comfortable speaking authoritatively about things they know nothing about. Grrrr……

        I’m so sorry!

        Could you email the letter to admin@spinabifidanaturally.com and I will try to post it for you. We have had lots of issues with file uploads. And apparently it’s still not fixed. So sorry about that.

        Tina

    • I tried to send you the letter from the hospital but it kept coming up with error

  • I have never posted here but I saw your post in my email and I had to say something. The most important things you’re daughter needs to do is make sure she finds a doctor who has dealt with a lot of children with Spina Bifida. Neuro Surgeon especially the most important. Its far to early for any doctor to tell you the quality of life they would have especially when they do not know the level of lesion.

    I was 23 when I gave birth to my daughter who has Spina Bifida lesion level between L 2-3. I was told she would never walk, she will have no movement below her hips, she could be possibly mentally handicapped and the worst part was I was told I am young and would be better off to abort her. 7 years tomorrow I gave birth to that little girl who has done everything those doctors said she wouldn’t and has truly blessed our family in every way. Those 7 years had its challenges and the first year was probably the scariest because of the unknown, but I just want to convey that the doctors really have no idea each child is different when it comes to Spina Bifida so not to lose hope. I recommend her getting on the Spina Bifida Facebook group they are amazing especially through this time that feels so scary.

  • Oh my! Hugs to you. This scary part will pass. It’s so hard when many things are unknown…but what we DO know is those doctors can’t predict the quality of life those precious babies will have. Another great resource for you may be the “Spina Bifida Parents Group” on facebook. Many members are experienced and will be able to help you, or are possibly in your area and can meet you to provide support. Do not give up and feel defeated.

    You will be the advocate for your daughter and her babies. It is so so so important that you feel 100% confidant in the doctors who will be caring for them. Do not hesitate to travel to the best facility. I say that because we took our Spina Bifida daughters care 4 hours away, it was the best decision we ever made. Our local hospital can’t even compare to the experience and knowledge at the bigger hospital.

    Each life has a purpose. Those twin babies will bless you in a way you never knew was possible! Keep the faith!

    Much love,

    Erica

  • Welcome and congratulations!! First grand babies?
    I’m not sure I have ever heard of a diagnosis being made so early. Even at this stage it seems there is no way to tell where the lesion will be along the spine. Typically, its around the 20 week anatomy scan where they can actually visualize markers that point to Spina Bidifa, such as a “lemon’ sign and “banana” sign and the actual lesion.

    I would also suggest seeing a neurosurgeon, not neurologist. Even though, Im not sure they could tell you much more at this stage anyway.

    Big hugs to you and your family. I know it seems so scary right now but those babies will be just fine!

    Keep us posted!

  • Samira, how did the appointment go today?

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