Possible Tethered cord/spina bifida?

[lindsayms05]

Hi ladies, I'm not sure where exactly to post this. My lo is 10 months old. When she was born, her doctor mentioned that she had a sacral dimple and that they were common and we would just "keep an eye on it." She also was born with a hairy back, although she had hairy ears as well, hehe. I wouldn't say she had a tuft of hair, more like her whole lower back was hairy. The hair has since disappeared and at her latest appointment (9 months) her new pediatrician didn't see a sacral dimple either. However, my lo did develop a small hemangioma above her buttcrack and also has one on her stomach (small).

I know sacral dimple, hair, and birthmarks on the spine are all markers for possible spina bifida and tethered cord. I asked her new pediatrician if we should be concerned and she said that if she had seen my lo as a newborn, she would have sent her off for an ultrasound just to check but since that wasn't done and she seems to be developing okay, that she wouldn't worry about it. She did then tell me if I'm still super concerned that she would put a referral into the nearest Children's Hospital (2 hours away). With her being 10 months, she would have to be put to sleep and have an MRI.

I'm torn on whether to put her through that or not. The hair on her back is gone, her dimple is gone, her hemangioma is tiny. BUT, she's just now starting to crawl and isn't pulling up to stand yet. She can stand with support and bears weight on her legs, but can't stand on her own while holding onto something for any length of time, if that makes sense.

What would you do? Wait and see or have the MRI?

 

[mummy2o]

I'd have the MRI. I know it sounds horrible, but its better to treat any problems earlier than later. That being said, my DS wasn't standing or walking until the 18 month mark. He was really late! DD who is a little younger than yours at almost 8 months she can stand, supporting herself for a little bit, about 1-2 minutes max. But supported would stand all day, or at least until nap time!

 

[sequeena]

Hi my son was born with sacral dimples and also has hair on his back (though I wouldn't say excessive just fine downy hair). His sacral dimples are checked 6 monthly at a specialist developmental assessment he has with his paediatrician but I have been told that if you can see the bottom of the sacral dimple then there are no concerns (we can see the bottom of our son's). He crawled at 11.5 months and walked at 17 months.

If you've been offered the MRI then I would take it for peace of mind.

 

[maisie78]

Personally I would wait. 10 months is not old enough to be worried about her not standing for any length of time. There is always a risk with a general anaesthetic however minor so the chances of anything being wrong don't seem high enough for me to take that risk.

If you do decide to go ahead though it isn't awful. Dd just had one 4 weeks ago as her condition is associated with epilepsy and stroke as well as developmental delays. We decided to wait until she was 2 before having one as the brain isn't fully developed until then and she showed no signs of fitting or problems other than those that come with blindness. She had also had 4 generals before they suggested an MRI and we didn't want to put her through another until she was older. Anyway it was fine. She came round really quickly and we were home again within 2 hours of her coming out.

End of the day only you can decide if you want to have one done and I think it comes down to how much you believe that there is something wrong x

 

[HBGirl]

My daughter has a sacral dimple. It is also a marker for 22Q. She was also super hairy at birth but I don't know if that is relevant?

 

[lindsayms05]

I'm not even familiar with 22Q, but I'm probably going to hold off on googling it right now.

Okay, I lied, I googled it. She has no other signs or symptoms of it so I think I can cross that off my list of things to worry about.

 

[HBGirl]

Nah, don't google. Its a spectrum disorder so you will only get the ZOMG SO HORRIBLE stories. My 22qt is amazeballs.

Its 22Q awareness month by the way.

 

[PinkPeony]

My LO just had her MRI to check for tethered cord on Tuesday this week. Still waiting to hear results. In our case she has some other defects that can occur along with tethered cord so it's standard protocol to check for it. It's not pleasant seeing them go under, but the GA wasn't too bad. She was her normal giggly self an hour after she woke up.
I kinda think you should go ahead and do the MRI. Not necessarily bc of the standing thing, but from what I understand symptoms can show up much later in childhood and once they show up the damage is already done. There's a tethered cord support group on facebook, but again it's a lot of scary stories.

 

[Blue12]

Pink peony do you mind me ask what the group is called on Facebook for tethered cord. My dd is going through a series of tests right now

 

[Blue12]

What are the symptoms of tethered cord that you ladies know? Of you don't mind sharing. We have a long story what my dd has been through but that is one of the possibilities I think

 

[PinkPeony]

Oh hi Blue!
All I know is there can be weakness, tingling or pain in the legs and incontinance. I've also heard that kids might walk on their toes. I haven't been able to tell if there's any issues with my LO yet bc she's still really little.

The fb group is called "Tethered Cord Support Group". I find it a bit overwhelming to read through it so be warned. Here's a good explanation about it from my daughter's hospital:
https://www.aboutkidshealth.ca/En/H...rvousSystemDisorders/Pages/Tethered-Cord.aspx

 

[BlueHadeda]

What are the symptoms of tethered cord that you ladies know? Of you don't mind sharing. We have a long story what my dd has been through but that is one of the possibilities I think

Here's a list of the symptoms my daughter had. Scroll down to see it highlighted in yellow.
https://roadtosanmichele.blogspot.com/2011/01/tethered-cord-explained.html

If you look at the top of the page, there's also a link to Boeboe's tethered cord story, if you want to read more. My daughter's story really started at age 3, when she was pottytrained. And it ended at being operated on for an occult tethered cord when she was 7. Much damage was already done, but we were really fortunate that we had loads of gain. I've listed those gains as the months passed after her detethering operation in April 2011. So you can have a look at the posts during that time if you want more information.

To the OP: I'm partial to finding out rather earlier than later. I have and am living with the results of not knowing for years. My daughter will live with these results the rest of her life. So if I had a choice, I'd do the MRI. But like I said, I'm partial, because we're the 1 in a million that was missed.

 

[PinkPeony]

Thanks for all that info BlueHadeda! Super helpful.

 

[Mrsmitch80]

Hi,

My daughter has a sacral dimple that you can see the bottom of and her cord was tethered. We were told at birth that it was fine but then another doctor noticed it and wanted further investigation.

She had surgery to detether at 12 months. The condition can be symptomless but if a child becomes symptomatic then the damage has already been done. I'd say it's best to get checked xx