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Parenting

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Could all these things mean spina bifida occulta?

13 replies

LJGFD · 29/04/2024 17:44

Help - I’m so worried and wondering if anyone has been in a similar position and it’s all worked out okay?

My little one is 10 weeks old, and I’ve spotted the following:

  • y shaped gluteal cleft (butt crack)
  • hairier patch around it (not a tuft, just a patch of more hair)
  • elongated indent at the bottom of the cleft (not a simple hole/dimple, but a definite indent)
  • curly toes on both feet
  • dodgy bowels, mucussy poops
  • stork mark at the nape of the neck

I’ve convinced myself that all these things together mean he’s going to have an issue.

I’ve booked to see a specialist in two days time, but in the meantime, has anyone had these and it all been okay?

and also, given his age, should I be asking for an ultrasound or an MRI?

thank you x

OP posts:
InAgreeance · 29/04/2024 18:11

Hi OP. I too had convinced myself my son had this after the GP said she's worried about the tuft of hair and dimple as well as a birth mark. She referred for an ultrasound which confirmed all is ok. They said more often than not, it's nothing to worry about. I believe the more serious type would have been caught by now and would have been very obvious

LJGFD · 29/04/2024 18:55

Thanks so much for your reply, that’s great news that it’s all worked out okay :) how old was your little one when they did the ultrasound?

OP posts:
flarp · 29/04/2024 19:08

Yes. All of those could mean it. My children had none of those symptoms and both have spina bifida. One of them has anterior sacral myelomeningocele. You wouldn't think it to look at them.
Point being it might be something, it might be nothing. Worth raising with GP.

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LJGFD · 29/04/2024 19:15

Thanks @flarp, will definitely pursue further, was your children’s discovered after birth?

OP posts:
flarp · 29/04/2024 19:25

No, unbelievably the youngest at 2.5 after a couple of emergency surgeries, and the eldest at about 5.5 when they connected the dots and realised they had an uber rare condition. Had x ray and found part of spine missing.
I forgot that in my original post my youngest had odd mucousy stools despite being exclusively bf.
I know it's scary but honestly it is not worth expending finite energy worrying about an outcome you have no control over.
Good luck with the specialist. Many children have sbo and don't even realise it as it has no impact. For others there is an impact but these vary wildly. My kids are significantly impacted due to their underlying condition which caused sb, but they live happy active lives. Very happy to chat more if you find out there is something underlying - I'm 5 years down the line now so far more comfortable with the unknown than I was.

presidentofthefashionclub · 29/04/2024 19:25

My DD had a hairy sacral dimple spotted by the paediatrician when she was born. I was told it was possible spina bifida occulta but majority of cases are symptomless and many people have it without knowing, so they'd only refer if she developed symptoms further down the line.

Superscientist · 29/04/2024 19:34

I don't know what type he had but my granddad was born with spina bifida in the early 1930s and has experimental surgery when he was a newborn pro bono as it was pre NHS. He was discharged from hospital soon after and never had any complications from it after that. My great nan met her midwife in the street when he was a few months old and she was incredibly shocked that the baby with her was the baby she delivered. She started the conversation with "I'm sorry for your loss". I can only imagine that things have only gotten better since then

Mucus poos with newborns can be normal and can be a sign of cmpa so keep an eye out if other symptoms appear not that I want to give you more things to worry about!

LJGFD · 29/04/2024 19:44

Thanks all!
@flarp and @Superscientist - I’m EBF too and the mucus poos are relentless! I’ve been treating it as cmpa so have cut out milk, but I’ll raise with the spine specialist too just in case it’s relevant x
@flarp did you spot any anomalies with your little people’s feet?

OP posts:
Superscientist · 29/04/2024 19:51

LJGFD · 29/04/2024 19:44

Thanks all!
@flarp and @Superscientist - I’m EBF too and the mucus poos are relentless! I’ve been treating it as cmpa so have cut out milk, but I’ll raise with the spine specialist too just in case it’s relevant x
@flarp did you spot any anomalies with your little people’s feet?

50% of babies are also allergic to soya so it's important not to replace dairy with soya for the first few weeks. You don't need to remove both at first just don't add high levels of soya to your diet.

InAgreeance · 29/04/2024 20:31

@LJGFD he was 8 weeks old when he had his ultrasound x

mum2oneonly · 15/06/2024 18:07

Hi @LJGFD what happened in the end? Our little one has just been diagnosed with SB at 14 weeks after birth. He has a off centre bum crack, lump and red mark on his back and has a stalk mark on his neck and eyelid, although they say that’s not connected?

Id love to speak to other parents in the same situation although I appreciate every case is so specific..

LJGFD · 15/06/2024 18:22

Hi @mum2oneonly
we ended up having the MRI at GOSH at 11 weeks ish, and all was clear / no signs of spina bifida. Just a collection of benign skin quirks in our case
so sorry to hear of your sons news, hope everything is ok xx

OP posts:
mum2oneonly · 15/06/2024 18:37

@LJGFD thats good news! Pleased to hear it for your family x

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