Crooked butt crack??? Just got call from doc with results!

[san fran shan]

I took my twins in for their two month check up and vaccines. The doc looked at their butt cracks and my daughter's has a crooked crease right at the top. She said this could mean she has a tethered spinal cord. Monday she will see a neuro sergion for a physical exam. From there they would recommend an MRI to see if her cord is tethered. If it is, she would need surgery to have the the tethered cord snipped. I am so scared she will need surgery. It makes me so sad. Even sedating her for the MRI freaks me out. Has anyone heard if this or had experience with this? If she has a tethered cord and it doesn't get fixed it causes neurological problems as she gets older.

Also their vaccines were Monday and they are still fussy and not eating like normal. No fever. How long were your babies fussy after their shots?

 

[Sunshine12]

Have a read of this.

https://www.essentialbaby.com.au/forums/lofiversion/index.php/t194542.html

 

[erikab922]

My LO has both a sacral dimple and a crooked butt crack and the GP and nurse both said it's absolutely fine, lots of babies have it - crazy how advice is so different!

 

[Sproglet]

Robyn has a twisted bum crack and dimple too, the paediatrician spent a long time checking at her new baby check up (1 day old) but it's not been mentioned since.

I will be bearing it in mind when she's older though, if she gets any strange symptoms- there's a lady on here (BlueHadeda I think her name is) whose daughter really struggled due to occult tethered cord.

 

[Mrsmitch80]

My daughter had a tethered spinal cord and had the surgery. It's scary but it needs checking out, my daughter had a dimple that was checked by a hospital and gp, we were told that it was fine - well it was far from fine! A dr at our children's hospital noticed the dimple, checked via ultrasound and the diagnosis was confirmed by MRI.

If your lo needs surgery just remember that tethered cords can cause nerve damage if left leading to incontinence and loss of feeling in legs so its really worth it. I'm so thankful that a dr noticed my daughters dimple as we had been told on two occasions that it was fine!

Feel free to ask any questions xxx

 

[scottiejunior]

My lo has this and so does my oh! I was told by a specialist in hospital that its just a quirk- it's good that ur gettin lo checked out but hopefully it's also nothing

 

[BlueHadeda]

Yes, we too are unfortunately very familiar with tethered cord. My eldest daughter has no signs on her back. She developed normally until age 3 when we pottytrained. She just never stopped having the odd accident (about once a week). At age 4.5 she started having bowel accidents too, about once a month. Around age 5 we noticed she's developing slight foot abnormalities, really really slight only. At age 7 only was she diagnosed with an occult tethered cord (occult means hidden, thus not showing up on MRI). Between ages 5-7 she has been with about 10+ of the best qualified specialists and none of them could diagnosed her, even though some suspected tethered cord. The operation was a huge success and we've gained loads of function back, but unfortunately she has some permanent nerve damage to her bladder, bowels and feet. We deal with this every day, and there's nothing more they can do for her.

My 2nd daughter, 6 months old, also has a slightly crooked butt. I'm absolutely terrified of her having a tethered cord as well. Our pead is unconcerned though, even after going through the whole ordeal with my eldest. So for now, I'm not pushing an MRI. But if she were to show any sign (foot weakness or deformaty, bladder infections or severe constipation, etc.) I'll insist.

Good luck to your baby. It's awful that she needs sedation. But if it is a tethered cord, the earlier they catch it, the better chance you have of there being no permanent nerve damage. If I've known what I know now, during my daughter's first year of life, I would've almost happily have put her through the surgery before age 1. But don't worry too much just yet. By far the most "markers" on the back is actually innocent, and not indicitave of a tethered cord. Let us know what the dr says on Monday?

 

[san fran shan]

Thank you for all your replies. Blue, I am so sorry your daughter had to go through all of that. Poor thing. Mrsmitch and Blue, if we have to go further, I will definitely hit you up with questions. I had never even heard of this tethered cord thing before and was caught off guard. I am happy their doc noticed it and we have access to good medical care. I will update after her appt as soon as I can.

 

[san fran shan]

Not much happened at the appointment. The doc examined her and wants to do the MRI but not til she is four months old due to the sedation.

 

[Mrsmitch80]

That's great news, at least with an MRI you will get a reliable answer. Try not to worry too much about the sedation, they use a mask and gas for little ones usually, you will cuddle your lo and the anaesthetist will slowly move the mask towards their face whilst the gas is running so they become a little drowsy before its fully on their face although my daughter at that age would grab the mask and try to eat it so it never took long to sedate her!

Then they wake your lo up a little before you are called in, by the time they're awake enough to know what's going on they will be having a cuddle in your arms! Honestly she will have no idea that you weren't there xxx

 

[BlueHadeda]

Thanx for updating us. Did the dr mentioned anything about his findings after the physical exam? Does she have any neurological deficits, or is the MRI purely just to rule out tethered cord for sure? It's good that they want her a little bit older for the anaesthesia, but just horrible that you now have to sit with this sword over your head for 2 months. If you remember, please update us after the MRI?

 

[san fran shan]

The doc just said we needed MRI to be sure. She has no other symptoms besides the crooked butt crack. I'll update when the MRI is done. Thank you for your support

 

[AmyB1978]

Good luck San Fran Shan, glad it,is,getting checked out!

I also need some advice. My lo has what I swear is a slight dimple and her butt crack "continues" past where I think it should end, it's a kinda red line. It concerns me, especially as my DH had a sister who passed away as a child from a surgery relating to spina bifida. I showed the pediatrician and she says its fine but never seemed to really look at it. Since the last check up I also notice to hard/bony bumps kinda right where the butt crack ends and the sacral dimple, if it is one, begins. I want a 2nd opinion but don't know where to take her. DH is acting like I am crazy and tells me I should trust her pediatrician or find a new one. He also seems to think it is ok to leave it to be looked at again at her 6 month well baby (she just had her 4 month) but if there is something going on I don't want to waste time plus I already had her look at it (she did nothing more than a quick glance) at the 2 and 4 month appointments.

Do I wait? Do I go back to her dr and demand she really look at it and have her referred to get it checked out further? Do I take her somewhere else for a 2nd opinion? If so, where?

Please someone help me figure out what to do! Sorry to the OP for stalking, taking over, but I searched for this and figured if I tag into your post people might see it.

 

[margarita1979]

Stalking this, as well. I didn't know there was such a thing as a tethered cord. I just happened to read this thread and then checked DS later that night. He also has a crooked butt crack. My doctor has never mentioned anything about it, but now that I think of it, she doesn't really flip him completely over during his exam. We just had his 6 month visit a few weeks ago and aren't due to see her again until 9 months. Should I call and book an appointment? Not sure what to do.

OP, hope everything goes well during the MRI.

 

[san fran shan]

Hi ladies! I think if you have any concerns definitely get it checked out or ask for a second opinion. I had no idea this was even a thing. I guess my doc routinely checks. She flipped both babies and looked.

Emma's butt crack is in a Y shape as opposed to straight up and down. Her MRI is next Monday June 11th. I'm really nervous about her being sedated. I have these horrible thoughts that she won't wake up But I know it has to be done.

 

[Feronia]

Best of luck for the MRI.
My DD has a crooked butt crack as well (2 sacral dimples -- one larger), and my midwife noticed right after she was born. She examined them thoroughly, though, and said that they're closed and that there's no reason to get them further examined. It sounds like your doctor is recommending the MRI just to be safe.

 

[Scottish mum]

Oh I don't think my lo was checked for this? I'm in the uk. He's 6 months. Unless they did but I wasn't aware.

I hope everything goes ok. You sounds like your a brave mummy and you'll get thought what ever the outcome is x

 

[BlueHadeda]

OP, good luck for next week!! And don't worry, the sedation they give is extremely light. More like a sleeping pill, if I understand it correctly.

Good luck San Fran Shan, glad it,is,getting checked out!

I also need some advice. My lo has what I swear is a slight dimple and her butt crack "continues" past where I think it should end, it's a kinda red line. It concerns me, especially as my DH had a sister who passed away as a child from a surgery relating to spina bifida. I showed the pediatrician and she says its fine but never seemed to really look at it. Since the last check up I also notice to hard/bony bumps kinda right where the butt crack ends and the sacral dimple, if it is one, begins. I want a 2nd opinion but don't know where to take her. DH is acting like I am crazy and tells me I should trust her pediatrician or find a new one. He also seems to think it is ok to leave it to be looked at again at her 6 month well baby (she just had her 4 month) but if there is something going on I don't want to waste time plus I already had her look at it (she did nothing more than a quick glance) at the 2 and 4 month appointments.

Do I wait? Do I go back to her dr and demand she really look at it and have her referred to get it checked out further? Do I take her somewhere else for a 2nd opinion? If so, where?

Please someone help me figure out what to do! Sorry to the OP for stalking, taking over, but I searched for this and figured if I tag into your post people might see it.

I've replied to your pm.

Stalking this, as well. I didn't know there was such a thing as a tethered cord. I just happened to read this thread and then checked DS later that night. He also has a crooked butt crack. My doctor has never mentioned anything about it, but now that I think of it, she doesn't really flip him completely over during his exam. We just had his 6 month visit a few weeks ago and aren't due to see her again until 9 months. Should I call and book an appointment? Not sure what to do.

OP, hope everything goes well during the MRI.

I would just wait until her 9 months appointment. My baby has a crooked butt crack, and they did an x-ray at 9 months for uneven hip fat rolls. It clearly showed the bottom spine, where there was no spina bifida occulta (opening in the bones). My eldest daughter had tethered cord without spina bifida occulta, but it's extremely rare. Almost unheard of. Usually, there will be a SBO noticed on an x-ray. I'm taking it as a good sign that my baby's crooked butt crack means nothing. 9 Months isn't bad timing in identifying a tethered cord, if it indeed turns out to be something. They only rarely operate before 9 months in any case, for a tethered cord. So I think you should be fine waiting until 9 months to get it checked out. And remember that though a sign could be indicating a tethered cord, most signs turn out to mean just nothing.

 

[san fran shan]

Emma's MRI was yesterday. I was very anxious and scared but it went just fine. It was so hard to leave her there. They wouldn't allow me to be in the room when they sedated her. My DH and I went for a walk during the MRI to pass the time. It took an hour. When she woke up she was so sad and would cry, then fall asleep, then cry this sad weak cry. We gave her a bottle and she was better. After about 2 hours she was back to normal. I have an appt scheduled for Tuesday to get the results. I am not sure why it would take so long. I am going to call sooner than that and get my answers!!

 

[AmyB1978]

Glad the MRI went okay, let us know how you make out with the results.