I am 31 weeks pregnant & my baby was just diagnosed with Colpocephaly last week. At a routine U/S in our 28th week they saw his left ventricle enlarged (they said slightly) but classified me as high risk pregnancy & refered us to a specialist for further tests. Had Level 2 U/S at 29 Weeks & they couldnt get a good image but said all his measurements (head, body, bones) all measure perfect & no other abnormalities (even in brain other than this one slightly enlarged Ventricle). So they sent me for blood test to check for toxoplasosis (sp?) & CMV Infection all came back clear so they also sent me for a fetal MRI for a better view of his brain & it confirmed his left ventricle enlarged & they said brain volume loss in that area so we were told of his Colpocephaly diagnosis. We had an Amnio this week at 31 weeks & are waiting on results (10-14Days) Plus had another U/S, still showed it mildly enlarged but head, body & bones all measure perfect still. We are devistated by this diagnosis after passing all the other earlier tests (12 wk Nuchal screening & the 18 wk triple marker) with flying colors & no previous U/S catching this sooner than 28 weeks we were just in complete pregnancy bliss dreaming of bringing home our healthy baby boy now we are torn upside down & in a state of shock. Our doctors could not give us any good/positive prognosis for our child when he is born, they just tell us this is a rare cephalic disorder & nothing really can be known on how mild or severe until after baby is born. They seem to us, to be telling us the out come will not be a good one by advising of late term termintation which is crushing to hear. I just want more info on this disorder & the net isnt too helpful, it just says the same thing over & over but states since 1940 there have been 50 documented cases (50 are you kidding me?). I cant find any support groups to talk with because of the rarety of the disorder & just wondering if there is anyone on the site that has had the same diagnosis as ours I would love to hear from you but since it seems I am the first on here to add a comment It doesnt seem promising 🙁
You should check out the ventriculomegaly forum on this site. Enlarged ventricles are very common, you may find someone on there with a similar story as you. I was told my sons left ventricle was enlarged too, but by 36 weeks the ultrasound had showed that it corrected itself. I know these things are so hard to hear, try to stay positive, Im sure things will work out for you.
Leaving this post here for anyone that follows & gats a similar diagnosis as we did of Colpocephaly because there isnt much info out there on it let alone much positive info or stories. We got the amnio results back yesterday & they are all clear…so there is no known reason why Kaden’s left vent in brain is enlarged but his diagnosis is still Ventriculomegaly/Colphcephaly. Doc checked left ventricle again & said it looks better & was able to get a blury measurement only due to the way baby is laying again, it measured at 1.03cm = 10.3mm which is down slightly from what his measurement was 2 weeks ago at 1.15cm = 11.5mm. Everything else still checked out good with him tho & he is growing perfect in all over ways… a little big actually weighing in at 4lbs 15oz. I did have him check again to make sure his corpus collosum is in his brain & he did confirm it is there & fully intact… Doc said due to enlarged vent being an isolated incedent because nothing else missing or abnormal in his brain or his body he said he feels Kaden should have very little side effects & was very optimistic about him but of course wont know anything for sure until after he is born & years after with him needing plenty of tests after born…We are just really happy to finally get a more positve report from one of our docs after being on this rocky roller coaster of the unknown for the last 5 weeks…at least now we feel better & breath a little easier…feel like I can start getting back on track with getting everything ready for his arrival & my baby shower next weekend. Of course this will always be in the back of our minds for years & will have to for signs of delay but we will work thru it as it comes…just had to share or more positive news with you all after my last blog when were told not so good news…he is checking the measurment of the left vent in two weeks one last time before Kaden is born to see if it has continued to decrease in size or see if gotten bigger. Being 33 weeks & so close to the end I am just so wanting him here in my arms
Colpocephaly diagnosis for my son inutero when I was 29 weeks pregnant, I am leaving this post of our success story of our son after he was diagnosed with colpocephaly & ventricularmegaly when I was 29 weeks pregnant with him…some of our story I have posted below on previous days so others can find when googling & also my full story is in blogs on my profile on this site because when my son was first diagnosed with this disorder I immediatley started googling it & searched the web for days trying to find out as much as I could & find some good news where someone that decided not to termintate & it turned out to be everything was ok….I only found one. On 11/3/09 at 39 weeks pregnant my son came into this world just an absolutely beautiful little baby a CT scan was done on him before we could take him home & results given to us by our nuerologist…our son is perfectly healthy. On the Ct scan after his birth there are no signs of brain volume loss like were were told he had on the fetal MRI we had done at 29 weeks while I was pregnant…so my son does NOT have colpocephaly like we were told nor is his left vent enlarged out of normal range like we were told all ultrasounds showed while I was pregnant…My nuerologist said we were misdiagnosed, my OB & specialist were wrong & he is seeing these diagnosis more & more while women are pregnant & then baby being born just fine because yes technology has come along way but it is not perfected yet. My sons brain looks absolutely as it should & normal as can be. I cried so hard at this news for pure joy because for the last 10 weeks of pregnancy our world had stopped in worry for our son due to his diagnosis of the worst. I am so glad that we did not listen to either of our docs (OB & fetal specialist) when they repeatedly pushed termination (even at 30 weeks prego). Our nuerologist told us to take our healthy little guy home & enjoy him….he does want to see him again at 6-8 months as protocal. My son Kaden is now 2 months old & is just the sweetest happiest little guy. Meeting all his milestones…smiling, cooing, responding to our voices & rolling over from tummy to back & weighing in now at 11 lbs 11 oz’s & 23 1/2 inches long. I am so grateful every day for him…So often I just sit with him in my arms while he sleeps & watch him & get teary eyed at the thought that had we listened to the docs & let them push us into terminating even at such a late stage my perfectly healthy little boy wouldnt be here. He is just our little miracle baby & I am so blessed to have him in our lives. I just wanted to leave this for others down the road that get the same diagnosis for their little one while pregnant like we did with the baby not show any other signs of abnormalities so that others can find some hope after being told the worst like we were because I found very few good things when I googled colpocephaly at my sons initial diagnosis while I was pregnant…doctors can be wrong like they were in our case (they are only human) & only more accurate testing can be performed after baby is born…& in our case they were so way off in diagnosing my son that it isnt even funny & could have cost us my sons life & our joy of having him had we termintated due to the docs diagnosis & what they saw or didnt see on their screens/tests while i was pregnant even in the 3rd trimester. I know not all out comes turn out to be like ours when diagnosed with this disorder but I want other scared parents that get this diagnosis inuter for their child to maybe find this in their searched & maybe if similar story to ours have some hope of things turning out to be ok.
Hi, my name is Linda and I have a facebook group called Parents of kids with Neurological Disorders. We started it when my Godson was diagnosed with Colpocephaly at birth. Please feel free to join us. There are other parents of babies and children with Colpocephaly on the group.
Here is the link: http://www.facebook.com/group.php?gid=52798552829&v=app_2392950137&ref=ts