septum pellucidum absence

Hi, I know this post is old but I wanted to share some information about this topic.  My son was diagnosed in utero with ventriculomegaly. After birth, additional MRIs and tests confirmed that he has partial absence of the septum pellucidum and agenesis of the corpus collosum. I remember asking the doctor during my last exam to give me a worst/best case scenario and he responded, "I am very sorry, but it doesn't look good.  But there are always miracles".  Despite the "facts", I never considered aborting my child.  I knew I would love him no matter what.  Whether it was a miracle or not, my son is now five years old and seems to defy all odds.  Although he was born with an enlarged head (95th percentile) and is in the lower range in weight and height, he has met or exceeded all milestones.  He has perfect vision, is incredibly intelligent for his age, has a great sense of humor, and amazes those who knows him, including his doctors.  I have complete faith that he will lead a long, fulfilling life.

I have absence of Septum Pellucidum. I did not know it till last year and I am 47 years old. I have done well for myself. I delivered two healthy children and no miscarriages. Growing up not knowing my condition brought a lot of questions. I had 20/20 visions up until a few years ago. Now I need reading glasses. I am not as coordinated when it comes to sports. As a child I learned differently than other kids. I skipped sentences when I copied notes as a child and now as an adult I over came my childhood minor shortcomings and write poetry. My grades in college were A's and B's. I learn things really fast. I crochet, knit, cross stitch, quilt and choreographed dances. As a child I couldn't even hold a needle without getting hurt and had two left feet. I am as normal now as an adult as any, with a positive outlook in life because I know I am an overcomer and my God has helped me all these years. With this short version of testimony, is just to say absence of septum pellucidum does not mean one can't have a fulfilling life.

I have missing septum pellucidum, usually it means you have septo optic dysplasia if you have vision, hormone, growth,etc probs. Look up info of it. NO DONT ABORT OVER THAT!! I got missing septum pellucidum. I'm fine. I'm 39!!! :O Pls your baby deserves a chance. :( From a concerned friend and Christian. :)

hi, i have a 13 month old daughter she also has septo-optic dyspasia. she is completely blind in her right eye and has vision in her left. her septum pellucidum is absent! i am just asking for any feed back on this.. she is not walking and hasn't even tried to crawl....i asked her eye doctor if it is because of her eye sight and he said no its cause of the missing septum pellicidum, is any one else experiencing this with their child? or has experienced it??? plz let me know. and when i was pregnant my obgyn didn't even tell me about her missing septum pellucidum was the supposed to? cause that would have been really good information to know before she was born.

We were aware of our daughter's ASP w/larger than normal ventricals & there wasn't anything that the doctors or surgeons could do about it until she was born, that is except stress us out our entire pregnancy. The only thing we could do was pray. And we did a LOT of that.
We have been blessed, my daughter just made 2 & has hit every milestone she should have to this point.

FYI - My sister is a nanny for a little boy who is perfectly healthy. He is 15 months old & doesn't even try to walk yet. Every child does things at their own pace. My daughter crawled at 10 months & walked at 13 months.

I am a 37 yr old woman with septo optic dysplasia ( aslo missing my SP AND corpus callosum) they said I would be retarded but have an above average IQ in all except math and some cognitive funtions like tying,buttoning and using zippers. I also cannot drive due to having NO depth perception. but mine is more then an isolated missing spetum pellucidum. Septo optic dysplasia and Agebnesis of corpus callosum. My point is doctors are not ALWAYS right.. They also said I would never walk and aside from a slight wobble I walk fine. keep an eye on his heart though!  Sometimes heart defects go along with midline brain defects.

My daughter just turned three and has ASP ( abence septum pellucidum).

She was counting to 50 and doing the alphabet at 18 months. She is extremely intelligent and well advanced for her age. Like all parents we think she is clever but our little one is disturbingly clever.

We underwent genetic counselling, extensive eye tests and multiple scans. Nothing out of the ordinary was ever identified.

This has not affected her development in any way. There is very little information about this condition. I'm interested to know how a 37 year old identified the missing SP. 

We would like to one day have a scan to identify if we have ASP. 

 

Thankyou for sharing your feelings n experience with us as me and my husband was told just 2 days before that our premature baby giril born on 05th april 2013 was diagnosed with ASP.....but now i feel that with all that i read and understood....we both have decided not to worry and just pray for her to get well soon and come home....pooja jibu

Hey everybod i jus had twins jan 5,2013 n i find out both of my bois are missin dat dey been home sence jan 29,2013 dey are doin real gud the only problem i c is dey dnt follow me wit dey eye wen i talk to em are anythang its like no eye contact at all wit both bois but wen i went to get dey eyes check dey said dey cn c but from me my babies do not have eye contact at all dey take meds 3times a day hydrocortisone dey doin gud on it ryte nw im just tryin to see do anybod else baby take meds for the part dats messin im tryin to get alot of in4 as possible becuz im only 20 n my babies only 3mnths i had em @ 35 weeks im jus tryin to learn more bout it

Hello to all of you,

 

I have been reading and following all the posts since May 2012 when our premature daughter was diagnosed with ASP. It was a routine and actually the last (out of all in all three) ultrasound of her brain before her discharge from the premature baby unit. She was born 8 weeks early (April 2012) and we still do not why. Up to the 31st week of pregnancy there were no problems until I early contractions had started. She never had any problems since birth. She actually had great apgar score and all her blood values after that were always fine. She never needed artificial respiration, she was absolutley at the same good health level as other premature babies without ASP. The doctors never expected to find something abnormal. In the first ultrasounds they did, the had not even see any abnormalities.

 

When we got the diagnosis 5 weeks after her birthday, I felt so incredibly sad, shocked, power- and helpless. When the doctors told me, I just felt like being in a movie and not living my own life...They started to tell me that they had found a malformation and that the effects of that malformation could not be anticipated, but that during her childhood/youth it would show, how effected she would be or not...she could have sight or hormonal problems, mental retardation or be totally normal! I looked up all the internet and read many different things,bad, worse and very little good stories... the first days after the diagnosis I felt paralyzed and as if they had killed a part of me...the joy of having a premature baby that had done so well without problems was suddenly gone...the insecurity of not knowing how our life would be was so terrible...and that even the doctors could neither give a detailed explaination nor future anticipation made it worse... But when time passed by, she came home with us...and I understood that maybe a future anticipation was not necessary, not even helpful and over all POSITIVE! Because there was and there is hope for everything to be just "normal".

The first weeks of course, one was so sensitive to all signs of the little one. Waiting and hopingfor the baby to show first (conscious) eye contact and smile...and when all this developed just normal and even early in time (as she was born premature), the fear was getting less and hope and security were coing back and taking over again!

 

At all her pediatric appointments, they were always perfectly satisfied with her development. Of course, we also had further appointments apart from the regular ones. I just wanted to be sure and not miss any possible problems.  Her eye movements and reactions as well as all eye examinations (optic nerve examination and VEP) were fine and showed no abnormalities. Also she is growing well and reaching all her milestones at time. She started crawling at 10,5 month (actual age would habe been 8,5 month) and now at 13 month (actually 11 month) she is starting to make her first steps along the sofa and tables. She is very communicative and social. She smiles and laughs a lot, she is a real sunshine!!!

 

Of course, having that background knowledge, I tend to be very detailed with open "alarming" eyes. There are always moments, that I remember everything and if there is something that makes me insecure, I ask myself if this could be related to ASP. But then I talk to other parents, and they observe same things in there children without ASP...so I know that it is just fine and normal and that sometimes we just need more trust.

 

We will keep on monitoring her development, but also a specialist told us, that he has seen many different children with ASP and that it is not always related to SOD. Or that many children with SOD, do not necessarily have ASP. So there is always the chance of it being a normal variation of nature. (that's how it seems to be in our case) Nevertheless, no doctor can tell us right now if she could develope hormonal growth problems after her 2nd birthday rigth now. Neither do I know if anyone has started to recognise problems because of ASP when the child was developing normally in the first 2 years after birth? Or even normal during childhood and then having problems in youth or adulthood?

 

All in all, I just want to say we feel really blessed and that there is always hope!!! No one knows what can happen in the future and therefore we have to enjoy every moment in life and espercially with our children...!!! Some babies are diagnosed with severe damages during pregnancy, but are born normal and without or very little problems, others are never diagnosed up to having children or grandchildren themselves...

 

I really want to express my deepest respect to all the mothers and children that face  or have faced these insecurities and may have or had to deal with real difficulties of complex phenomenon like ASP, SOD or other problems or illnesses...you are all great and admirable examples of strong and loving people!!!

And I really thank you all for ur posts, all of them have helped us during the difficult weeks and month during the ASP diagnosis.

Thank God in our case we are lucky and really happy with our little girl that has shown no difficulties and hopefully (as we all wish for our children) will never face none! But even if, we will make it and always do our best to make life easier and as "normal" as possible.

 

 

 

 

 

 

 

 

 

 

I am 31 weeks now and in 28 weeks we were diagnosed with enlarged ventricles and missing septum pellucidum... I still hope all will turn ok as it is still plenty time for developement...my husband doesnt really know and iam not telling him yet..have another check up in 34 weeks to see how we are doing... so if someone see this post please say ur prayer for my unborn son...my husband had 3 kids and none of them have any problems..this is my first child..first grandchild to my mum and firs god son to my sister and of course like everyone else we wish for healthy and strong boy... some of the comments gave me big hope...some of them are worring but all of you seem to be coping well. We dont have any other problems its is a perfect growing baby... and always help knowing we are not only one

Hi my daughter had just received this diagnosis it would be lovely to chat with u ? Kate

Chloe had had hormone test which have come back normal(she is 1 month old) and an eye test reveals the structure of nerves are there and are if an appropriate size so we are hoping she does not have septo optic dyspkscua , all she had is the asp

Hi, iam sorry to hear...it is sad no matter to who it happens... worse is waiting... but all we have is a belief that it will all come ok... not really sure what that septo... is but really wishh ur baby all the best

I know this is an old post but I am a 35 year old female with a congenital absence of the septum pellucidum. I have an IQ of 137, am a college graduate and have had a good life. When you look online it sounds like the most horrendous thing in the world. I never even knew it was missing until getting a series of MRI's because of migraine headaches.