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Referral for possible Spina Bifida

StodreStodre member
in Special Needs
Hi! Looking for some info ...
We had our preemie daughters weekly drs appt / wt check today. She is 4 weeks actual But her due date isn't until July 10. She is 5lbs 5oz today after being born at 3lbs 9oz at 31 weeks 6 days.

Anyway, last week I noticed an indentation that looks like an upside down v at the bottom of her back. No one ever said anything the whole 20 days she was in the NICU ... She moves her legs and arms and poops and pees well .. But her dr told me today that she probably has a form of Spina Bifida! And that we will need to see a neurosurgeon and she may need an MRI at 4mos.

This came as a complete shock because she is now 4 weeks old and this is the first we are hearing of it.

Anyone with similar experiences or children with Spina Bifida?

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Re: Referral for possible Spina Bifida

  • hopecountshopecounts member
    Oddly enough a good friend of mine has this. For her it was NBD until her early 20s when she started having back pain, she had back surgery to fix the issue and from there has returned to her normal activities which includes running half marathons. With closed spina bifida (which it sounds like this is) the impact is often minimal because the spinal chord is largely undamaged. The issue with open spina bifida is the amniotic fluid erodes the spinal chord causing nerve damage. So take it one step at a time follow up with the appropriate medical people and eventually Physical therapy if she developes a delay but it may be a minor issue for her. Which is why they want the MRI to evaluate what the status of her spine is to see what the extent is and get a better picture of what she will be dealing with.
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  • ToastieSimonsToastieSimons member
    Sounds like a sacral dimple.  These can also mean nothing and be insignificant.  However, it would be a good idea to go to a neuro and get it checked out.  

    Spina Bifida is a huge spectrum.  There are people who don't even know they have it because it's closed and can be formed without much issues with spinal cord.

    Then there are severe cases which causes profound issues.

    I can't imagine how scary that was.  DS1 has a sacral dimple (spent time in the NICU too) and one dr noticed and it was like "oh my goodness!  Did he have a spinal MRI? Has anyone mentioned this sacral dimple before?".  I freaked.  But, my son doesn't have spina bifida, just a sacral dimple.
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • funchickenfunchicken member
    Ditto what @ToastieSimons‌ said. It might not be anything to worry about. DD2 has a sacral dimple, and we had an u/s at 3 months to make sure there were no issues. There weren't, and the dimple is barely visible now (she's 3).
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  • realisticdreamsrealisticdreams member
    One of our good friends has a little girl who has SB, diagnosed in utero and had to have surgery the day after she was born to close.  Our daughter has a milder form.  She has the sacral dimple, and it's very deep but no one ever mentioned anything about it.  Besides her other medical issues we had no inkling something was wrong spinal cord related until she was around a year.  She started getting UTIs was really constipated, and she walked on her tippy toes.  She fell alot, they did a regular MRI and was read as normal except she had a lipoma and fatty filum.  Then she quit peeing all together.  We got a 2nd opinion and they did an MRI on her back & on her belly of her lumbar spine and her spinal cord did not move, meaning it was tethered to something.  Her issues are honestly worse than some kids who have spina bifida occulta which is what i'm guessing they think she would have.  
    What area are you in?  Neurosurgeons are really hit or miss, we've been through a couple at this point.  
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • Assembly_ReqdAssembly_Reqd member
    Nate had a wonky upside down Y and we had a spinal MRI to make sure he didn't have a tethered cord. (He doesn't)

    I was expecting him to have one because one of his genetic deletions has caused tethered cords in other patients who have been researched. I was pleasantly surprised. :)

    We never saw a neurosurgeon for it. Our neurologist approved the MRI.
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  • realisticdreamsrealisticdreams member
    Assembly_Reqd said:
    Nate had a wonky upside down Y and we had a spinal MRI to make sure he didn't have a tethered cord. (He doesn't)

    I was expecting him to have one because one of his genetic deletions has caused tethered cords in other patients who have been researched. I was pleasantly surprised. :)

    We never saw a neurosurgeon for it. Our neurologist approved the MRI.
    Morgan has that Y/crooked butt crack lol.  The neurosurgeon said it's pretty standard for any midline anomaly to get an MRI now.  
    Peyton had a normal MRI laying on her back yet she still had symptoms.  The 2nd opinion ordered it prone/supine.  And when she was flipped back to belly & imaged her cord did not move. Just because it ends at the normal spot doesn't mean it isn't tethered.  I've done so much research on this and the minimum statistic i've found is that 40% of people who have a "normal" supine MRI actually show they are tethered on the prone.  I wish it would just become the standard way to check for TC.
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • Jenny952Jenny952 member
    Hi, my DD has SB myelomeningocele, which is the "worst" form of SB.  Hers affects her mobility, so she's in a wheelchair and has a shunt for hydrocephalus.  I would definitely get to see a pediatric neurosurgeon, who can officially dx the SB, which sounds like it could be occulta or meningocele.  Just kind of depends on what's going on in there.  Where do you live?  I'm on a pretty active SB board over on baby center and I'm sure one of the moms there can refer you to a N/S who is good and familiar with SB.  

    I hope you get the answers you're looking for!
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