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Parents to be, recently diagnosed

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  • Parents to be, recently diagnosed

    Hello everyone! My name is Jessie and my husband and I found out last week that our baby girl Isabel has spina bifida. I am now 31 weeks along but at my 20 week scan is when we first found out that something wasn't quite right. At that time I went for an in depth anatomy scan due to elevated AFP levels. I am from the Metro Detroit area in Michigan and we decided to stick with the same dr that treated me for my previous 2 miscarriages. Isabel will be our first child but we had been trying to conceive and planning for her arrival for 3 plus years. Anyways, while at the scan, which took more than 3 hours and not only the tech but 2 different Dr's to look over me they told us that while her spine (all areas) appeared normal, there were some concerns with her brain. They said she has slightly more fluid on her ventricles than normal and that her cerebellum was very hard to find but they finally found it but it was very small. They wanted us to get an amniocentesis but we were decided against it because they said it can cause a miscarriage and after already losing two we were not going to risk it. Then they offered termination of the pregnancy, which is completely against our beliefs! After this devistating appointment we decided to find a new dr. We realized that a good dr was worth the drive and we found a really good catholic dr about an hour away from us. We really wanted and needed someone at that point whom shared our beliefs and who values every life as we do. After seeing him a few times and seeing his maternal fetal specialist they felt they wanted us to get an opinion from Motts Childrens Hospital at U of M. It was there that we finally got our diagnoses last week. I have to wait until the end of September to meet with the neurosurgeon (which really makes me nervous since I'm due on 10/25/16) to get more answers. At this time we know her opening in in the S region and that she may or may not need a shunt. It was very hard to hear this news after DMC ruled out the SB but at the same time it made sense with everything going on in her brain. The hardest part was learning that because it took so long to finally learn she for sure had SB that we missed an opportunity to even think about fetal surgery since I was already 30 weeks when we found out. But anyways I wanted to share our story and be part of this wonderful group! I am thankful that God has blessed us with this beautiful girl and she will be very loved. I just had a baby shower this past weekend and had a great turn out. I feel so blessed to have a lot of support and family and friends that truly care! And I hope to find more support and friendships through this group!

    Thank you for hearing the beginning of our story!

    Attached Files

  • #2
    Congratulations on your impending arrival!

    My son with spina bifida is now 3 years old. He also has a shunt, but to be honest it's such a non-issue now that you can almost forget about it. It sounds so much scarier than it is.

    I found this forum when I was pregnant, and someone told me that the pregnancy is the hardest part because you don't know what to expect. It was totally true. Once your baby is here you'll see that she's just... a baby. With some physical differences, but they just won't seem like as big a deal once you've started to get to know her as a person. (Honestly, my child with SB is the "easy child." His older brother is the most physically healthy kid you ever saw, but I find him way more challenging... he has 100 times more energy than me and is too smart for his own good and has to question absolutely everything we say! Not that these are bad qualities at all, but it can make him seem like harder work!)

    Good for you for finding a new doctor that matched better with your family's values. That already shows that your baby will be in good hands and you'll be a strong advocate for her!

    And re: fetal surgery, don't beat yourself up too much about missing the deadline. We had the opportunity to do it and we declined after a lot of careful thought, but I spent weeks agonizing over whether I'd regret the decision later. (So far, we haven't.) Fetal surgery has some benefits and it also introduces some additional risks (premature birth and any complications that can result from that). We might have been more likely to pursue it if it would have made a definite difference as far as our son walking vs. never walking. But if your daughter's myelomeningocele is at an S level, that's low down and probably won't cause as many mobility impairments as in someone who has it higher up. (My son's was L4 and the doctors say he functions at an L3/L4 level, which for now means walking with crutches and leg braces.)

    Good luck in these last weeks of your pregnancy! And definitely stick around here... this forum meant so much to me when I was pregnant and helped me feel much better about everything! There are parents who have been through everything you're dealing with now and there are adults with SB who will give you a lot to think about as far as issues that may be important to your child when she grows up. I just hope my son turns out half as kind and articulate as the people on here!


    • #3
      Welcome and congrats!!!! I have two gals with SB, one biological and one adopted. We were offered fetal surgery for Madi but declined after talking to our neurosurgeon. He did clear us for a natural birth, though, which I was excited about . Madi, my bio daughter, is about an L2 level and functions between L2 and L3. Ramya, my adopted daughter with SB, is about an L3 level. Both do really well and are such a joy! Please let me know if you have any questions!
      Jamie, mom to Conner, Ramya (SB), Deena (OI) and Madilynn (SB) and wife to David. Madilynn was diagnosed in utero with spina bifida and hydrocephalus and Ramya also has spina bifida and hyrocephalus. Check out our blog at!


      • #4
        Congrats on your baby! She must have already arrived by now
        My daughter was born with SB at the sacral level as well. Fortunately, she didn't require a shunt. She didn't start walking until around her second birthday, but when she did, she did so without bracing assistance.
        It was a pleasant experience raising her. She's an intelligent young lady who is a good big sister to her younger siblings. Like most eldest daughters, she was mum's adorable little helper with chores. The main problem with her SB was potty training. It took a decade to potty train her during the daytime and much longer at night.
        I found a Youtube video that well describes a first-hand experience with Sacral SB: