absent corpus septum pellucidum

A place for moms and moms-to-be with special needs children to find support.

Moderators: B Michaelson, southernbelle, jessm, 1daysoon, reapage, Honey Bunny, unaffected, maddy, TrebleLily

absent corpus septum pellucidum

Postby Laureenjellybean » Tue May 25, 2010 1:02 pm

Anybody have any experience with this?
I had my anatomy U/S today. I'm 20wk 3d. They could not find the corpus septum pellucidum. Everything else looked normal on the scan other than this. (she was actually measuring slightly ahead)
My Dr. is referring us to a peri. When I asked him how common this was (assuming they see it often) he said they see it about once a year, but that they'd just seen one 2 weeks ago. With that case, the peri said the baby hadn't formed it yet and it was going to form a little later.
I can't find much on google, but I did find that as an isolated finding it is very rare. i'm hoping they just couldn't see it, but after seeing every other structure I'm nervous that it really isn't there. The prognosis looks very variable. I can't even get into the peri until next week. :(
Me: Laureen (30)
DH: Kenny (30)
Ds:Carter (2) (born Feb. 23, 2009)
DD: Calliana (born Oct 3,2010)
:angel: Feb 08' Baby Angelo-left us to Triploidy
:angel: :angel:-Nov 09' twin blighted ovum
:angel: July 11' early m/c
Image
Laureenjellybean
Girlfriend
Girlfriend
 
Posts: 4203
Joined: Thu Jan 03, 2008 1:00 am

Postby Cindy » Tue May 25, 2010 2:11 pm

I just researched it for the last half an hour and I`m so sorry that you are going through this with you LO. I don`t see how they can say it will grow later, but there must be a reason they said so. If they can`t find anything else associated with this, as they did tend to say in most articles, it`s never really an isolated finding, perhaps they did just miss it? I dunno, I mean, weirder things have happened
Image
Cindy
Girlfriend
Girlfriend
 
Posts: 5094
Joined: Sun Feb 01, 2009 1:00 am

Postby Laureenjellybean » Tue May 25, 2010 3:18 pm

Cindy-I dont' know what to think. I've been googling and from what I can find it is so very rare to have it as an isolated finding. I'm thinking it could be one of two thing. One-they weren't necessarily looking for the other anomalies, so it might not be isolated. if it wasn't part of the routine anatomy stuff, they might not have seen other weird stuff. The stuff they DID look at seemed normal, but on the other hand, I don't know if they were looking for a pituitary gland or anything like that. Two-They COULD have missed it, but she looked for a LONG time. She has 25 years experience in ultrasound and the Dr. said there was a slim chance she missed it, if it was there to begin with. The Dr. just mentioned the other person's story, but I know NOTHING about that person. For all I know, they could have had their U/S done at 18 weeks, in which case, it still might have needed the extra 2 weeks or so to "catch up" The Dr. tried to reassure me, but he also recommended a peri. I'm just hoping that it might show up at another scan. If they'd had a hard time finding other stuff, then I wouldn't be as worried.
Me: Laureen (30)
DH: Kenny (30)
Ds:Carter (2) (born Feb. 23, 2009)
DD: Calliana (born Oct 3,2010)
:angel: Feb 08' Baby Angelo-left us to Triploidy
:angel: :angel:-Nov 09' twin blighted ovum
:angel: July 11' early m/c
Image
Laureenjellybean
Girlfriend
Girlfriend
 
Posts: 4203
Joined: Thu Jan 03, 2008 1:00 am

Postby Cindy » Tue May 25, 2010 4:17 pm

I wish I had more to say about this. I mean, there are some amazing techs, but there are some crap ones who have been around for ever too. I`m hoping that`s the case. And even if the tech was right, I`m sure she would have looked over as many other parts that she could. If she knew enough to detect that, she knew enough to look over other parts that she normally would have been told to do on a rescan, so I`m sure she peaked there too.

I`m sure you know this next part, but try not to read too much into google! You work in the nicu ( I think or did) and think about how big and crazy all those things that a soon to be mom knowing she would have a preemie and would read on google. How terrifying it would seem, when you know how small of a deal somethings are. A PICC seems terrifying, or intubation, or apneas. (not to say it is actually a small deal, but I hope you know what I mean)


Okay, I`m just rambling in a poor attempt to ease your mind when in reality, there is a very good chance they are right. I can`t believe they just left you like that without looking more into it right then and there. I`m sure the peri will want to have another look and hopefully then you will get all the answers you need. Until then, if you want to go crazy and vent and be terrified or strong or nothing at all, I`m sure I speak for us all when I say we are all here for you.
Image
Cindy
Girlfriend
Girlfriend
 
Posts: 5094
Joined: Sun Feb 01, 2009 1:00 am

Postby Laureenjellybean » Tue May 25, 2010 5:40 pm

Google is my worse enemy!! I was convinced I was going to bleed out and die with DS (I had a complete placenta previa). I was also convinced he would die, but thought I would die more. I'm sure you were equally freaked out by your google searches. Worse than google is the stuff that i have seen in the NICU with kids that have neuro issues...that scares me.
I would LIKE to think she was a crappy tech, but the Dr was pretty confident in her abilities. I would think that if her abilities were a little sketchy, the OB would have subtly said something like, "sometimes we don't see things that are there..." He basically just said that sometimes they form later...or that is what the Peri told his last pt. The place is certified by some ultrasound association, so they have to be decent.
I'm annoyed that the peri can't see me sooner. I've heard of people going to a peri the SAME day if there was an issue. Now, I have to wait a day for them to fax the paperwork, a day for the peri to review it, and THEN they'll call to set up an appt. If I end up going to one of the places, my DS will NOT be allowed to come(per their policy)...which leaves me hanging, because depending on the day, we have NOBODY to watch him. So frustrated!! There wasn't much more they could do today...I mean, the lady scanned me for a full hour. I'm not sure if she realized that the structure was missing early on, because she kept on looking closely at the heart. She said it was a very clear picture, yet she went back to it a while later to see the 4 chambers. I wonder if she was looking for something specific.
Thanks so much for your kind words, support and letting me vent. Dh doesn't understand how I'm feeling right now. He's so laid back. He said he's not going to worry until there is something to worry about. I'm not planning on telling my family because they are the eternal optimists...not that there is anything wrong with that...BUT it can be frustrating when you're scared about something and everybody is in la la land where everything is merry and perfectly fine...they can't understand why in the world you'd be scared. Not sure if that makes sense.
Me: Laureen (30)
DH: Kenny (30)
Ds:Carter (2) (born Feb. 23, 2009)
DD: Calliana (born Oct 3,2010)
:angel: Feb 08' Baby Angelo-left us to Triploidy
:angel: :angel:-Nov 09' twin blighted ovum
:angel: July 11' early m/c
Image
Laureenjellybean
Girlfriend
Girlfriend
 
Posts: 4203
Joined: Thu Jan 03, 2008 1:00 am

Postby Cindy » Tue May 25, 2010 5:55 pm

It totally makes sense. And you would be more scared because you see every time you go to work that things DO go wrong..and the majority of those people did everything right and thought it wouldn`t be them. I wish I could stop your mind from racing to things you have seen now, but I know I can`t.

See I was the opposite, I was convinced Bracey and I would live, and they were convinced we would die....pffft my probable stupidness proved them wrong.

But yeah, I understand what you mean about optimists. When things are really going wrong, or there is a really good chance it is going to, people are always like, no, keep your head up, he`ll be fine, she`ll do great, you`ll pull through...its like..i don`t want to talk about if things are fine..I`m not scared and wanting to talk about if things are fine now..I want to talk about how I`m scared there is a real possibility this sucks right now, so shut up and let me get prepared mentally incase it does. It drove me insane...and wow did I ever sound like a bit$# there.

But yeah, I mean, we get ultrasounds to check on these things, and they get trained to know these things and be able to find them. And it is scary, but your baby has a great and strong momma who is educated and amazing, and an angel to so many families. Your baby will be blessed either way. I hope that if they do find any issues related to this, that it be one of the better ones for the quality of your child's life.

And thats BS how long its taking to get in and see the Peri. I would just die waiting. You can vent to me anytime you want about the wait or anything.
Image
Cindy
Girlfriend
Girlfriend
 
Posts: 5094
Joined: Sun Feb 01, 2009 1:00 am

Postby Laureenjellybean » Tue May 25, 2010 6:14 pm

I guess you have more of a positive attitude than I do when it comes to this stuff if you were convinced you guys would make it...but you guys pulled through...so you showed them!!

If there truly is something wrong with my baby girl it is going to make work VERY difficult over the next few months. We've had a string of drugged out moms that neglect their babies and use drugs during pregnancy. How can I take care of their perfect babies (aside from the brutal withdrawal) wondering how I can do things right and have a baby with problems? I think it would take everything, and I mean EVERYTHING, to maintain my composure and NOT tell someone off...severely.

The stupid thing about mental preparation is that I'm not 100% sure it even works. I feel like with a LOT of stuff, you can prepare yourself and run through all the possible scenarios, yet when it hits you, it still hits you.

If she has problems, I'll deal with it as it comes, but for my baby's sake, I don't want her to be blind, I don't want her to have all the problems that could come out of it. I want the best quality of life possible. I've read cases where people have it and never know it, functioning AMAZINGLY (those are the rare isolated cases) But, then again, maybe since I have Poo for luck and tend to have the lower end of probability (ie...0.5% of a placenta previa)maybe we'll luck out with the rare, MINOR issue...if it is really there.
Me: Laureen (30)
DH: Kenny (30)
Ds:Carter (2) (born Feb. 23, 2009)
DD: Calliana (born Oct 3,2010)
:angel: Feb 08' Baby Angelo-left us to Triploidy
:angel: :angel:-Nov 09' twin blighted ovum
:angel: July 11' early m/c
Image
Laureenjellybean
Girlfriend
Girlfriend
 
Posts: 4203
Joined: Thu Jan 03, 2008 1:00 am

Postby Cindy » Tue May 25, 2010 6:33 pm

Laureenjellybean wrote:I guess you have more of a positive attitude than I do when it comes to this stuff if you were convinced you guys would make it...but you guys pulled through...so you showed them!!


It must have been the drugs...jk jk...it was just..intuition. I was scared beyond end that we wouldn`t...but something inside told me it would be okay.

Laureenjellybean wrote:If there truly is something wrong with my baby girl it is going to make work VERY difficult over the next few months. We've had a string of drugged out moms that neglect their babies and use drugs during pregnancy. How can I take care of their perfect babies (aside from the brutal withdrawal) wondering how I can do things right and have a baby with problems? I think it would take everything, and I mean EVERYTHING, to maintain my composure and NOT tell someone off...severely.


I was thinking about those babies and parents when I was posting last about the parents who do everything right. I actually had the displeasure of being beside a crack baby. There was no one else in our section because we had just lost one to the intensive side who passed the next day, but I heard them, I heard the doctors...and when that baby was lost...I said something to them. I couldn`t help myself. I went outside, went for a few hour walk, and came back and they were moved. No one ever mentioned it. So I don`t know how you would have the strength to go to work and not. I`m so sorry that you have to go through this and work where you do right now. Perhaps you could take some time off?

Laureenjellybean wrote:The stupid thing about mental preparation is that I'm not 100% sure it even works. I feel like with a LOT of stuff, you can prepare yourself and run through all the possible scenarios, yet when it hits you, it still hits you.


That`s true, but I think staying pessimistic (I`m a fan can`t you tell) is that if you picture worst case, anything else is uphill


Laureenjellybean wrote:If she has problems, I'll deal with it as it comes, but for my baby's sake, I don't want her to be blind, I don't want her to have all the problems that could come out of it. I want the best quality of life possible. I've read cases where people have it and never know it, functioning AMAZINGLY (those are the rare isolated cases) But, then again, maybe since I have Poo for luck and tend to have the lower end of probability (ie...0.5% of a placenta previa)maybe we'll luck out with the rare, MINOR issue...if it is really there.



I`ll send many thoughts and many prayers in your direction. I really hope it is an isolated case.



edited to quote properly
Last edited by Cindy on Wed May 26, 2010 2:58 am, edited 1 time in total.
Image
Cindy
Girlfriend
Girlfriend
 
Posts: 5094
Joined: Sun Feb 01, 2009 1:00 am

Postby Laureenjellybean » Tue May 25, 2010 7:54 pm

I'm curious to know how that crack mom reacted to what you said. Wonder if it stuck with her? Hope it did. I know that sounds mean, but you know what, it's deserved.

As far as taking time off, not sure how that would work. I only work per diem as is...so 1-2 times per month really. I'm scheduled a little more than that for the month of July...i haven't put myself down for any time in August yet. I'd HOPE my work would be understanding, but at the same time, I dont' want to talk to them about it either.

Financially, I really should go to work. The current plan is that Dh is going to try to take FMLA (he HATES his job and was going to quit in July and we'd just pay Cobra...and he'd HOPEFULLy find somthing soon...not a good plan, but he's miserable!) I convinced him to stick it out until after the baby is born, take FMLA (so 12 weeks) relax, gather his thoughts be with his family and look for a new job. That way, we wouldn't have to pay Cobra and he'd get a breather from his stupid job. that being said, it'll be 12 weeks unpaid leave. I was hoping if I worked a little this summer we'd have a little more of a buffer. We can swing it, but it's a matter of how much dipping into savings we want to do. Also, winter brings heafty heating bills (close to $400/mo) which stinks!!! Anyway, long comment short, not 100% sure I can take the time off.

I kind of agree with the pessimism thing. It causes a lot of anxiety though. I spent YEARS literally worrying and thinking about people dying around me. Nobody did. As soon as I saw a therapist and helped knock the fear out of my head, my best friend dropped dead at 26 years old, my FIL dropped dead of a heart attack the next day, I had my first miscarriage a few months later and my grandmother passed away(whom i was VERY close to)...all within 8 months. I'm still alive and I actually handled it better than I ever thought I would. Maybe it was all my worry/mental preparation. The expect the worst, hope for the best, may be the way to go.
Me: Laureen (30)
DH: Kenny (30)
Ds:Carter (2) (born Feb. 23, 2009)
DD: Calliana (born Oct 3,2010)
:angel: Feb 08' Baby Angelo-left us to Triploidy
:angel: :angel:-Nov 09' twin blighted ovum
:angel: July 11' early m/c
Image
Laureenjellybean
Girlfriend
Girlfriend
 
Posts: 4203
Joined: Thu Jan 03, 2008 1:00 am

Postby Cindy » Wed May 26, 2010 3:20 am

I hope what I said to them stuck with them, but i`m sure it didn`t.

The baby was born and wasn`t breathing, and for a few hours was intubated. They thought the baby was not going to make it at birth. It was a 33 week old male. But yes, somehow the parents didn`t know this by two days later which was when it was transferred into side two with Bracey, and had taken her lil buddies places who was sent back to side one (most intensive) and passed

Anyways, the doctor came to speak to them about how the baby did not breath for a few minutes after birth, and may have some sort of brain damage blah blah blah and that, and other things, and the condition of the placenta had given them reason to drug test the baby. They wanted consent.

So then the doctor left and after just finding out they nearly lost their baby, what do they sit and talk about? He says, "We should rip off the cord, I hear they test with that" She says, "they can`t really test him without my consent so they can fu}k off" He`s like, naw momma, there`s no way for them to know"....and the proceeded to talk about their drug use and how to hide it..never mentioning what this poor baby went through and was going through. Baby screaming a lot of the time too

So 1, for whatever reason, it took them days to go see their baby or call to get an update. 2) Normal people would be upset to find out that they nearly lost their baby and 3) It was a crack baby.

This couple pi$$ed me off more than the other crack babys parents and we lost that other baby that day in the nicu. So what I said I`ll make it nicer so I can follow the rules here), is basically that I felt really bad for that baby that it didn`t have parents who loved it enough to put it first, and that I hope social services took him away from them and found a loving family like any of the other damilies in the nicu. I told them that it made me sick that they did this to their child, while other mothers who didn`t do drugs during their pregnancies are losing their babies, and care. I told them I was disgusted and then called them a few names.

A nurse came over while this happened and I said right there in front of them, just so you know, these parents were just talking about ...filled in the blanks, and then walked out. As I was leaving the dad says, "when the cord falls off, we want it"

Grrrr I`m still so mad

I mean, I realize there is an addiction beyond what i can imagine, but to not even care about your child or feel guilt?



Sorry I changed your thread into this
Image
Cindy
Girlfriend
Girlfriend
 
Posts: 5094
Joined: Sun Feb 01, 2009 1:00 am

Postby Laureenjellybean » Wed May 26, 2010 10:09 am

FYI to those LOW LIFES, YES, they CAN test without permission...and they don't need the cord. If it was that early on and the nurses and Dr's suspected drug use, they most likely tested the baby's meconium. I doubt the parents collected THAT one. That makes my blood boil. I'm sure you were boiling as well. How irritating. I suspect and HOPE that if the baby was only a day old it hadn't passed all the meconium yet and it was sent out for testing. I hope they got their poor child taken away. How irritating!!!

My peri appt is scheduled for next Wednesday. SOOOOO...another week of waiting. I also am going to have to tell my sister, because I'm not allowed to bring my son along. I'm so mad!!! She's the only one that can watch him, since both my parents work. It's not like I'm going to have Dh sit in the waiting room while I'm in there alone. I'd probably freak out.
Me: Laureen (30)
DH: Kenny (30)
Ds:Carter (2) (born Feb. 23, 2009)
DD: Calliana (born Oct 3,2010)
:angel: Feb 08' Baby Angelo-left us to Triploidy
:angel: :angel:-Nov 09' twin blighted ovum
:angel: July 11' early m/c
Image
Laureenjellybean
Girlfriend
Girlfriend
 
Posts: 4203
Joined: Thu Jan 03, 2008 1:00 am

Postby Cindy » Wed May 26, 2010 3:57 pm

What a long week this is going to be for your family :( It sucks that they are making you wait so long! But I mean, anything bad they saw, they told you, or you wouldn`t know yet, so maybe it really is an isolated incident. I mean, you said she scanned you for a long time. Maybe she was checking off the list of things usually associated and saw nothing?
Image
Cindy
Girlfriend
Girlfriend
 
Posts: 5094
Joined: Sun Feb 01, 2009 1:00 am

Postby Laureenjellybean » Wed May 26, 2010 5:28 pm

I'd like to think that is the case. She seemed awfully focused on the heart, which looked perfect...so I'm thinking she was trying to cover all of her bases. The only crappy thing is that quite a few of the brain structures cannot be seen on ultrasound and need fetal MRI.
I'm thinking of contacting the hospital I used to work at and seeing if they can possibly see me sooner. I'm not even sure if they have a peri, but they do have a fetal care center for fetuses with 'suspected anomalies or diagnosed anomalies' so perhaps that is the route to go.
Me: Laureen (30)
DH: Kenny (30)
Ds:Carter (2) (born Feb. 23, 2009)
DD: Calliana (born Oct 3,2010)
:angel: Feb 08' Baby Angelo-left us to Triploidy
:angel: :angel:-Nov 09' twin blighted ovum
:angel: July 11' early m/c
Image
Laureenjellybean
Girlfriend
Girlfriend
 
Posts: 4203
Joined: Thu Jan 03, 2008 1:00 am

Postby Cindy » Thu May 27, 2010 4:07 am

Laureenjellybean wrote:I'd like to think that is the case. She seemed awfully focused on the heart, which looked perfect...so I'm thinking she was trying to cover all of her bases. The only crappy thing is that quite a few of the brain structures cannot be seen on ultrasound and need fetal MRI.
I'm thinking of contacting the hospital I used to work at and seeing if they can possibly see me sooner. I'm not even sure if they have a peri, but they do have a fetal care center for fetuses with 'suspected anomalies or diagnosed anomalies' so perhaps that is the route to go.



I think that that is a brilliant idea. I would absolutely see both the peri and these people! Knowledge is power! For both you and the doctors. The more doctors involved, the more ideas, and the more care you will get..also the more information because everyone will choose to tell you different things as they all will have their own experience
Image
Cindy
Girlfriend
Girlfriend
 
Posts: 5094
Joined: Sun Feb 01, 2009 1:00 am

Postby Lizc0002 » Fri May 28, 2010 7:36 am

I had a scare with my baby having enlarged brain ventricles, not the same thing exactly, but I can tell you the reason they are focusing on the heart is that they are looking for other markers of syndromes that may indicate a genetic disorder. I know it is so hard to wait. I had to wait an entire month to see if his brain ventricles grew in the month since the last US which would tell them if the ventricles were just slightly larger than the norm or if he had a potentially fatal or debilitating genetic disorder. Hang in there and unless you are going to a support forum try and stay away from the internet, it may just serve to freak you out more.

Liz
Image
Image
User avatar
Lizc0002
Girlfriend
Girlfriend
 
Posts: 5524
Joined: Mon Aug 14, 2006 12:00 am

Next

Return to Special Needs Babies

cron