Dad – Scared and confused

We just had our 20 week ultrasound and the technician has set us up for further testing to be done on suspicion of Spina Bifida in our little girl.  I’ve done as much reading and asked as many questions as I can but came across this board and figured i’d say hello and see if anyone might have had similar diagnosis or situation as us and could offer some insight (I realize that pretty much every case of SB is different however).

– We had our 13 week US and everything came back beautifully, no risk for any issues whatsoever

On our 20 week though, the technician remarked on the following;

– Borderline lemon and banana shapes, not pronounced at all

– ventricles are 9mm and 10mm which they say are borderline as well

– No indiciation of any lesions or bubbles whatsoever on the spine, spent 4+ hours doing ultrasounds including 4D ultrasound and only noticed a very small dimple on one of the lower sacral vert.

– Full range of movement of arms/legs (she kicks/punches my wife like crazy), crossing legs, wiggling feet etc…

– Technician remarked that the skeletal, cardiac and extremities (no indication of club feet at all) all appear perfectly normal

I’ve read papers that with the lemon and banana signs are pretty close to 100% accurate diagnosis of some form of SB, but I guess part of us are just grasping at what could be happening with all of the other tells not detectable or borderline.  Can a lesion or bubble suddenly develop at 24 weeks or sometime later?

Anyone have similar situations and if so what was the outcome?  Not knowing is a nightmare.

Thanks in advance.

4 comments

  • I had a similar situation and it took the high risk on ultrasound to see the lesion. Then I had an amniocentesis that confirmed it. Pray and God will give u guidance. We had fetal surgery at Vanderbilt they repaired eves spine while I was pregnant with her. Eve is 1 yo crawls and is trying to walk . She doe have neurogenic bladder and bowel. She has no shunt and is a blessing. It will be ok. I would go see a high risk ob.

  • Hello, I saw your post over on Baby Center and don’t know that I have anything helpful to add. Those ladies have a lot more experience with SB than I do, and have given you a lot of great advice.

    But I can tell you this, from what you say, your little one appears to have a very mild case. Ventricles still within normal ranges, no club feet, moving all extremities. Obviously none of us can predict the future, but looking at the data, things look great for your little girl.

    I think it’s important to remember that just because our little ones are born with their SB condition, rather than developing something later in life, doesn’t necessarily make it any more “special” or “difficult”.

    We have accidents, we develop health conditions, we all have “special needs” of some sort or another.

    My teenage daughter’s autoimmune condition, which she didn’t develop until just a few years ago, is much more painful and difficult for her to bear than my younger daughter’s Spina Bifida. She has NO IDEA there is anything wrong at all. She is just a very typical, happy, silly, hilarious little cutie pie.

    Please keep us posted.

  • Hi Dad,

    I also saw you over on Babycenter, but didn’t get there until you’d had many responses. They offered you sound advice there. The trouble with this stage is how nerve wracking it is to wait and see and feel like you have no info. The truth is that every child is differently affected so it just isn’t possible to give you specifics until baby arrives.

    Our daughter had an obvious lesion, mild but definite brain changes and we had surgery after birth. Now, at 17 months she walks with a walker and no bracing. Doctors and therapists all expect her to leave the walker behind in the next six months. Cognitively she is at or ahead of her peers and has a huge spoken vocabulary. Her bowel and bladder are affected, but it is nothing she won’t be able to manage independently when she is older. She is funny and spunky and unless you know about her, or see her with that bright yellow walker, you’d never have the slightest idea there was anything going on.

    So the first, most important thing is – CONGRATULATIONS!!! A little girl is a fantastic joy! Do you have a name?

    And secondly, Tspar is totally right. This will be a challenge, but at least you know now and can begin to prepare. When you add up all the conditions that children are born with, and the things they can be diagnosed with in child hood, and the things that don’t come along until their teens, and all the possible accidents that could happen at any time well… The thing is, being given something “atypical” to deal with is pretty darn typical. SB is well understood, has a large population of support and is something for which there is ever continuing development in the medical community. This will be A-OK,

    Congratulations again. Take a deep breath and settle in. It really does get better from here.

  • Hi! I also saw and just responded (very late) to your post on Baby Center. Also wanted to welcome you to this site, which has been very helpful to me for a smaller community/more personal feel and obviously the natural options.

    You asked about our kiddos. Caroline was diagnosed at 20 weeks, had a small L5-S1 lesion that was closed after birth, hydrocephalus managed by ETV/CPC at 7 weeks old. She is now 19 months, walks and sometimes runs with a walker or holding hands, sometimes wears AFOs, knows over 300 sign language signs, has a couple handfuls of words and imitates sounds (what does the cat say…meow), stops traffic with her cuteness, and is by far the happiest person I have ever met. Seriously. Crazy happy.

    Diagnosis time is the absolute worst, by far. NICU and surgery are tough. There are still days I hate SB, but those days are few and far between. Most days are just normal days like anyone has with a toddler. Yes, we have to cath (super easy) and yes we sometimes put on braces (they are kind of cute with purple flowers) but overall our days are filled with reading books, snacks, stacking blocks, getting dirty in the garden, singing songs, bath time, giggling, and trying to keep her from chasing the cat too much. Probably the same stuff everybody does.

    Your baby will be absolutely perfect. And quite possibly cuter and happier than any baby you have ever met. Congrats!!

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