Just been for 19 week scan yesterday to be told our baby has Spinal Bifida

Just been for 19 week scan yesterday to be told our baby has Spinal Bifida felt like our hearts had been ripped apart. Me and my partner have been told we have 3 weeks to make a decision obv its not something you expect to have to make. We want the best for  our baby but have been told there is a little fluid on brain and that the problem is at the bottom of the spine so may not be able to walk or go toilet properly. We are just wondering if anyone else is in the same boat and are able to help give us info.

Thanks

Hannah and Neo x

5 comments

  • Dear Hannah,
    I am so sorry to hear that you have received this shocking news. I know it’s not what you were expecting or hoping for. I was 20 weeks when we found out about our Lauren’s Spina Bifida. We were nervous and scared, not knowing what it all meant for us or for her. It has turned out to be the biggest blessing in our lives. We have since adopted another child with Spina Bifida. They both have shunts to take care of the fluid on the brain (hydrocephalus) and are doing AMAZING. Lauren walks with walking sticks and is very independent and smart and beautiful and talented. Mira’s birth mother gave her a rough start (smoking, drinking, prostitution, drugs), but even with all that, we have made great strides and she is very smart high-functioning. She does use a wheelchair for mobility. I am inspired and blessed EVERY day my girls. You are welcome to email me any time, wellspringhope@gmail.com
    Big hugs,
    Lydia

  • Hello Hannah,

    I’m so glad you found us. You’ve come to the right place! We have ALL been in the same boat. And we understand what you are going through right now. It was the worst day of our lives, for sure. I still remember every detail vividly.

    I have so many things to tell you; I don’t know where to start.

    Let me start by saying that it only gets better from here. Diagnosis Day (D-Day) is the absolute worst. And the NICU stay is pretty hard too, but in a different way. And the first year is pretty busy, but after that things settle down and become pretty darn normal, at least from my perspective. My daughter is much more similar to the rest of my babies than she is different from them. She’s smart, adorable, hilarious and gets into a lot of trouble. Right now I hear her babbling under the stairs, probably getting into something and making a mess. Yep, she’s gotten into a package of wipes and then smiled at me when I found her.

    I can’t imagine our lives without her. She is special and adds so much joy to our lives. She’s special, not because she has “special needs”, but because we are all rooting for her and want to see her succeed. Her milestones are more special than they were with our other children because they are things we were told she may not do. So when she accomplishes them, it is a time for celebration..

    I’ve heard so many moms say that they wish they could go back and tell their pregnant selves not to worry so much and to enjoy their pregnancies. So since you can’t do that to yourself, I will do it for you. Enjoy your pregnancy. Buy some special items, decorate your nursery, plan your baby shower. Enjoy it. You’ll regret it if you don’t.

    Regarding your diagnosis. From the very little you’ve shared, I would say that your diagnosis is not consistent with your prognosis. If your child’s defect is truly at the base of her spine then she has very high chances of walking. In fact, here are the stats:

    In a 25-year follow-up of 71 patients treated at birth in an aggressive, non-selective manner… 93% of patients with a sacral lesion ambulated 100% of the time. So if your daughter truly has a sacral lesion S1-5, she has a 93% chance of walking.

    My daughter has an L4-5 lesion and has met almost all her milestones. She rolled over both directions and crawled on time. She missed her sitting milestone, but not because she couldn’t sit, but because she refused to sit. We have 5 other kids, so I think she just preferred to chase them around. She just started sitting on her own a few weeks ago right around her 1 year birthday. She has no mental delays. To be honest, her biggest challenge BY FAR has been her clubbed feet. You didn’t mention clubfeet. And if your child does not have them, consider that a blessing. It’s not so much that it will affect her in the long run, it’s just that the correction protocol is such a pain in the butt and our doctor is so far away.

    Regarding bowel and bladder, these are challenges, but almost all individuals with Spina Bifida can become bowel and bladder continent.

    We are Christians and took our diagnosis as God’s will. God chose our daughter for us. And we vowed to do the very best for her and for Him. And we created this site as a way to help others.

    We all have health problems of some sort. And those who don’t should consider themselves very blessed. But I don’t find my daughter’s challenges any worse than some of the other problems our family has encountered over the years. So she may have to use a catheter and leg braces. At least she doesn’t have cancer! My older daughter was diagnosed with an autoimmune condition when she was 10 and suffered much more than my daughter with SB has ever suffered. You take what you are given and you make the most of it. But SB certainly doesn’t make life not worth living. And if you don’t believe me, hear it from the words of an adorable 10 year old who uses a wheelchair:

    http://www.patheos.com/blogs/rebeccafrech/2014/10/an-open-letter-to-parents-expecting-a-crippled-kid.html

    We are just a little group here on SBN, but there is a much larger group of moms over on Baby Center. Most of us are members over there as well. Here’s the link to that group too.

    http://community.babycenter.com/groups/a3825/spina_bifida_kids

    Please let me know if I can answer any more questions or help in any way. I will be praying for you.

    Tina

  • Welcome Hannah. And congratulations on your new baby!

    I can only echo what the ladies above have said. You’ll get lots of the same sort of advice over on BBC too. Its a great bunch over there.

    The truth is we have ALL been in the same boat as you are. And while it is a bit of a bumpy start, its been worth all of the worry and struggle.

    The best advice I can give you is this –

    1. Remember you are carrying a BABY not a diagnosis. So many people are going to be hyper focused on what’s “wrong”. Your baby needs you to be the voice of all that is right, which is 95% of everything.

    2. Listen to the advice you get about taking care of yourself. Be patient. Be kind. Be careful with and to YOU. You have a big job growing a baby. Ask for help and take it when it is offered.

    3. Learn from the other mom’s about what doctors to talk with. Read. Research. Ask questions. Don’t panic. Don’t waste your time on negativity. You only have a few months to get ready to meet your sweet baby. Make the most of it.

    4. And this is very important, do NOT confuse difference with disaster. Your child might not end up using the toilet the way you do, but that doesn’t mean they won’t be able to be clean and in control of their bodily functions. They might not walk all the time, but that doesn’t mean they will be dependent upon others to get them places. The truth is, your baby has as much chance at a full and fulfilling life as any other. Just because they may have to approach it differently doesn’t mean it will be some how “less than” a “normal” life.

    5. Finally, remember that this is all they will know. It isn’t something they used to do, and now they can’t the way it would be for you if you were in an accident and suddenly lost an ability you’d always had. This will be completely “normal” for them and not a loss they will mourn.

    It really all gets better from here. There is an amazing amount of support for you here in Internet land. Take it. Ask anything and everything.

    Then take a deep, deep breath. You can do this. You will LOVE this before it is all over.

    Welcome to the new you!

  • Hi Hannah! Welcome to our group and congratulations on your pregnancy!! Diagnosis day is the absolute worst, lowest point of spina bifida. I am not a person that cries very much or very often, but I think I cried more in the days and weeks following my D-day (which was May 2nd, 2013 at 2:45 pm…I remember every single moment) than in my entire life combined. It is ok to cry. It is ok to be sad. It is ok to feel whatever you are feeling. But please, please realize that your baby is going to be amazing. Enjoy your pregnancy. Find a good neurosurgeon – they are the experts on spina bifida. Be very wary about listening to OBs and MFMs. They might mean well and are usually nice people, but are very undereducated about SB. Especially in your baby’s case – a very low lesion like you describe has an excellent prognosis. Don’t let anyone scare you about the hydrocephalus and try to not pay attention to the measurements. I was obsessed with the measurements – they really, really don’t matter at all while baby is inside you. Everything can and will be managed once baby is here!

    My baby has a L5-S1 lesion. She does not have a shunt, but instead has her hydrocephalus managed with an ETV/CPC. She rolled over at 4 months, sat up at 5 months, stood at the couch at 6 months, and started crawling at 13 months. She is now (14 months) pulling up to stand on her own and will take steps when her hands are held. She is on medications and supplements for her bladder/kidney health and does have a urinary catheter placed to empty her bladder (this is super, super easy to do and adds about 1 minute to a diaper changing routine). She is curious, smart, talkative, and quite possibly the happiest person on the planet. People will literally walk all the way across the store/park/etc to say hi to her and comment on how cute she is. In case you are wondering what spina bifida looks like, here is what it looks like: http://community.babycenter.com/post/a49532914/beautiful_babies?cpg=1

    D-day is tough. The surgeries and the NICU are tough too. The first year is busy, but it is with any newborn. But you will see the other side of this – the side where you have a beautiful, perfect, wonderful, amazing child that will inspire you every single day. The love that you feel for this child will simply amaze you.

    Please keep us posted and feel free to ask questions. Nothing is off limits (both here and on BabyCenter).

  • I also just read this post, and it spoke to me (other than the advice to “google everything” – I don’t recommend googling spina bifida, but instead staying on this board and the BabyCenter board)
    http://themighty.com/2014/11/a-letter-to-the-me-who-was-terrified-of-our-diagnosis/

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