Mothering Forum banner

1 - 19 of 19 Posts

·
Premium Member
Joined
·
10,793 Posts
Discussion Starter · #1 ·
My daughter was born May 12th. I noticed a couple of days ago a Hemangioma starting to get darker and larger on her lower back (I swear I didn't notice this when she was first born). Its not at the base of the spine but up a little bit and off to the right side just a tad, but still very close to the spine. I also see a shadow of something on the spine lower down. Needless to say after have a daughter already with LMC-TCS (Lipomyelomeningocele and Tethered Spinal Cord) I am totally freaking out. Background, I did have an Amnio with her and the spine itself was fine according to the Perinatologist. He was very thorough because of my daughter Gabrielle.<br><br>
What do you think? She already has a Ped appointment Tuesday morning for her checkup. Or should I bypass him and go see someone else? I am nervous too because our old Ped in Southern Cal told us Gabrielle's was nothing to worry about. Ha!<br><br>
I took pictures today of it.<br><br><a href="http://img.photobucket.com/albums/v255/KatWrangler2004/June2008003-1.jpg" target="_blank">http://img.photobucket.com/albums/v2...e2008003-1.jpg</a><br><a href="http://img.photobucket.com/albums/v255/KatWrangler2004/June2008004-1.jpg" target="_blank">http://img.photobucket.com/albums/v2...e2008004-1.jpg</a><br><a href="http://img.photobucket.com/albums/v255/KatWrangler2004/June2008005-1.jpg" target="_blank">http://img.photobucket.com/albums/v2...e2008005-1.jpg</a>
 

·
Registered
Joined
·
66 Posts
My daughter, Elizabeth, has one as well smack dab in the center of her forhead. Unless it's growing and/or getting out of hand and/or in the way I'd not worry about it myself. If you had extensive screening done to rule out spinal or other issues durring the amnio and stuff I would just watch it. If you're unsure go get it tested. It's not worth worrying over. Tell your pedi the history and ask them to suggest a specialist to check it out.
 

·
Registered
Joined
·
5,911 Posts
<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
with gabrielle's history, i would definitely have this looked into thoroughly and asap. does lmc have a genetic or hereditary link?<br><br>
having said that, as you well know from all your research with gabrielle, hemangiomas can be perfectly benign, and the fact that her's is higher and off-center may be a good sign. both my boys have sacral dimples, ian's is really deep (can't visualize the bottom of it) and ian also has a small hemangioma on his forearm. but they're benign.<br><br>
keep us posted...
 

·
Registered
Joined
·
1,618 Posts
To me it just looks like a pretty normal little birthmark. My friend's kid has several and she isn't worried.
 

·
Registered
Joined
·
5,846 Posts
99% probability it's nothing to worry about. But as a SN mother, I'm 100% positive I'd be worried, just like you! if it's going to stress you at all, there must be a simple ultrasound or x-ray they can do to assess the area and make sure this is just a hemangioma- in which case it is normal that it grows rapidly for the first 6-12 months. The referral you'd want is to a vascular anomalies specialist.
 

·
Registered
Joined
·
1,094 Posts
I would get it checked out, simply for the "peace of mind" factor. If you are like me, you will just keep worrying about it until you do. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

·
Registered
Joined
·
1,630 Posts
I didn't know they were a reason to be concerned. My daughter has one on her lower back also. I didn't notice it right off. It has occasionally grown darker and then stays that way. Off to gather some info. Hope all is okay.
 

·
Registered
Joined
·
12,552 Posts
I would get it checked out.<br><br>
And <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2">
 

·
Registered
Joined
·
647 Posts
<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2"><br><br>
FWIW, both of my kids had a hemangioma (both high on their necks), one of which was not present at birth but developed a few days later, so it may not have been there when she was born. Both kids went through a cycle of it getting larger and darker before it eventually started lessening, and we were told that was normal.<br><br>
That being said, I would still have it checked out, if for nothing other than peace of mind.<br><br>
Is this a new ped since you guys have moved? I might start there, and if he can give you a referral, it might make the process go faster.
 

·
Premium Member
Joined
·
10,793 Posts
Discussion Starter · #10 ·
Thanks everyone.<br><br>
Its not the Hemangioma itself, its the fact is on her lower back and near the spine that worries me. Its the spinal location that makes is a marker. As is a dimple or hairy patch at the base of the spine. (Damn, I have learned so much in 2 1/2 years of this medical stuff. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/orngbiggrin.gif" style="border:0px solid;" title="orange big grin"> )<br><br>
The Ped we are seeing today is new to us. There are 4 Peds (saw a different one a couple of weeks ago in this practice) in this practice and I am making the rounds of seeing them all before I make a decision on which one.<br><br>
I will let you guys know what he says. Still need to figure out which Neurosurgeon we are taking Gabrielle too. Hubby and I didn't get into the NS discussion last night like we should of.
 

·
Registered
Joined
·
1,338 Posts
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>2boyzmama</strong> <a href="/community/forum/post/11529469"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
with gabrielle's history, i would definitely have this looked into thoroughly and asap. does lmc have a genetic or hereditary link?<br><br>
having said that, as you well know from all your research with gabrielle, hemangiomas can be perfectly benign, and the fact that her's is higher and off-center may be a good sign. both my boys have sacral dimples, ian's is really deep (can't visualize the bottom of it) and ian also has a small hemangioma on his forearm. but they're benign.<br><br>
keep us posted...</div>
</td>
</tr></table></div>
Same situation here! Both twins have sacral dimples which I find bizarre since they're fraternal and sacral dimples aren't THAT common. K (who we've renamed stringbean) has several stork bites (small) and E (now known as butterbean) has what we think is a hemangionoma on her thigh - big and round and red and puffy. I didn't know a hemangionoma near the spine could signal problems but I know the sacral dimple (or hairy patch) can. My girls' are both shallow so the doctors aren't concerned - spines also looked good on prenatal ultrasounds so they're never had ultrasounds themselves. but as I understand it figuring out if there is a spinal problem is fairly easy - just an ultrasound on the child - so I would ask to put your mind at ease... but the location would make me think it's just a fluke birth mark.
 

·
Premium Member
Joined
·
10,793 Posts
Discussion Starter · #12 ·
Hey all,<br><br>
Went to the Ped yesterday for her check up. Weighed in at 10 pounds 7 ounces. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/orngbiggrin.gif" style="border:0px solid;" title="orange big grin"> Up from 9 pounds 3 ounces three weeks ago.<br><br>
I really like this Ped. Its not the same one we saw at the last appointment either. So I am thinking of sticking with the one we saw yesterday.<br><br>
So anyway, he came in and he asked how she was doing etc and I said I have some major concerns about her. He asked what and I told him about Gabrielle first (she hasn't been seen at this office yet). He took a look at her back and said lets get her to Neurosurgeon to make sure what we have here. Asked who we were seeing for Gabrielle and I told him about the Spinal Defects clinic and how I didn't like the NS there (and the Nutritionist which he laughed and rolled his eyes when I said she said I need to fatten up Gabrielle). He suggested we try the other NS in the office and I wasn't really happy about it. Thinking the two NS would be of the same mindset. I mentioned the other Dr. at KU that was recommended. He said it was my choice. At first I said the other Doc at Children's but when the nurse came in to get info from me to call and make the referral she said you know if you really want the Doc at KU I will call them for you. I said YES! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"><br><br>
We are set up with the Doctor at KU for July 30th. He is going to look at both girls. Meanwhile Children's is setting up the MRI for Gabrielle. Unless the Doc at KU wants it at KU. I talked with his office and he was in surgery and they said they would talk to him and explain our situation and see what he wants. Right now it looks like very late July or August before Gabrielle can get the MRI at Children's. There schedule is that far out already. Children's is going to call me back.<br><br>
I really like this other Doc at KU's office. I have talked with two people there and they were very attentative and caring. Thats a good sign! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/thumb.gif" style="border:0px solid;" title="thumbs up"><br><br>
So looks like this will drag on for a while.<br><br>
Bad note about the appointment, Delaney is still jaundiced. They ran a blood test and she tested at a level of 9. She was 12 and 13 in the hospital. The Ped isn't too concerned but wants to watch it and recheck in a month at her next appointment.
 

·
Premium Member
Joined
·
9,138 Posts
<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I know it has to be hard to have the possibility and have to wait a month to get it looked at. I hope it is nothing. The thing below--is it darker skin, hair, or a dimple? <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

·
Registered
Joined
·
3,591 Posts
I think the new ped sounds great - yay for that! I'm glad that you have appointments in the work but sorry for the wait.
 

·
Registered
Joined
·
647 Posts
It sounds like you have found a good doctor! I'm sure that is such a relief. It sucks that you have to wait a month, I think waiting can sometimes be the hardest part.<br><br>
I'm glad things went well for you!
 

·
Registered
Joined
·
688 Posts
As a fellow TSCS mom, I paused when I read the description. Yep, that would put me in crisis mode, too. Then, I look at your pictures and gasped. That is indeed the hallmark location, shape and type of birth mark for a tethered cord. Once you've been through all this stuff, it's impossible to write it off as "just a little spot."<br><br>
So, TCs are incredibly rare. Yes, completely true. Can you rule out the possibility that one person might have TWO tethered cord children? Nope. My son's neurosurgeon used to believe that once a family had one, they didn't have to worry a bit for future children. Then, he had a family have a second one. While it's not genetic, it's not impossible. Unbelievably, incredibly rare - yes. Impossible? No. Odds are that it's nothing to worry about. However, if it is a sign, then thank heavens the child was born to a mom who knew what that mark meant. If you catch it before the child becomes symptomatic, then the outcomes are wildly different. I would not allow a pediatrician to calm me down on this one. They might see one TCS child in a career, or maybe read about one in literature. I'd be in that neurosurgeon's office, though. Not hysterical, out-of-control crazy mom, but serious, informed, not-take-no-for-an-answer mom.<br><br>
If you need help on this one, don't hestitate to ask.
 

·
Premium Member
Joined
·
10,793 Posts
Discussion Starter · #18 ·
We are set to see the Pediatric Neurosurgeon July 30th. The NS is out of the office most of July and thats when he will be back.<br><br>
We are keeping an eye on her back. The mark at the end of her spine looks darker to us. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
AllieFaye,<br><br>
I mean what would be the odds of Delaney having TC too? Everything I have been told is its a fluke that happens at 8 weeks gestation. I think they say that because they just don't know.
 

·
Registered
Joined
·
437 Posts
Good luck!! Hope everything turns out alright with her.
 
1 - 19 of 19 Posts
Top