42 Replies
Reen - November 15

I'm happy for you ;) Thanks for the update! Hope that my girl will turns out fine as well...


bump - November 18

bump :0)


Lory - December 2

Just wondering how you are doing Reen?? Give us an update!!! I don't have one as of yet. I have my next u/s 12/8. I went to the dr today (36 wks. yay!) and no progress. Cervix is still closed....


Reen - December 4

Hi Lory, I went for u/s last week and the doctor said that the ventricles is still enlarged. She didn't take the measurement tho... and I am too nervous/devastated to ask her for a measurement. She also confirmed that my baby has bilateral cleft lip/palate. I am now preparing myself, mentally, of whatever happens to my baby. I have an appointment with a reconstructive surgeon today to know more about this cleft thing. I don't feel happy at all with my gynae. I'm thinking of changing to a new gynae and the delivery plave. I'm not it because the news that she always convey is not encouraging and I am still in denial of having to face all this problems. I need a good mental boost..!! Most of the time I am lost...not sure of what to think and what to do. Thankful for a good supportive husband and have to be strong for the baby as well. Hope that it's going to be very well for you, Lory. Enjoy your last moment of pregnancy...


Tara - December 4

HI Lory, my story is somewhat the same as others on this post, they thought my baby boy had Trisomy syndrome, which if he went to full term he would only live a day or two. I was sent to a high risk OB and have been seen every 2 weeks since about week 10, I am now week 31. I had to have an amnio and after everything genetically was ruled out we went back for another u/s to find that he has a unilateral cleft lip/palate. We actually met with a pediatric plastic surgeon and he gave us a little hope in that he said it is virtually impossible to know whether or not the baby has a cleft palate by u/s, the lip, yes you can see but the palate is difficult to diagnose even with the 4-D, he said the only way to tell is to wait until he is born. We found a really good website called, it has a lot of information...if you have any questions I would be glad to try and answer them, I have to meet with a special feeding nurse within the next few weeks so we can learn how to feed him if he does have a cleft palate. Good luck to you and everyone else on here, we have gone through so much and I am glad to know there are others out there that know how we feel.


Tara - December 4

oops my previous post should be directed towards Reen, sorry about that....


Lory - December 4

Hi Reen! Thanks for the have been in my thoughts. I'm so sorry about the new diagnosis....are they sure that she has a cleft? I hope the appt. goes well and good luck with your doctors. Hopefully you will find a better one! Good to hear that you have a supportive hubby! That definitely helps alot!!! Stay strong! Thanks Tara, for sharing your story!


Reen - December 5

Thanks Tara for sharing your story. It's good to know that someone out there know how you feel. Thanks Lory for your virtual support ;) I went to see the nurse who works with Cleft Lip and Palate a__sociation yesterday. She taught me on how to feed the baby and show me the pictures of babies who had cleft and now have beautiful smiles. I also bought that special bottle and teats already. And then I went to see the plastic and reconstructive surgeon. He explained what I should do after the baby is born. For the time being, I just need to relax and enjoy my pregnancy. My gynae said that my baby might possibly have trisomy syndrome and she can survive for only less than 2 months. But, I choose not to believe that. My baby is kicking and moving all the time in my tummy and I instinctly know that my baby is healthy. Well...I just need to pray more and wait for my little bundle of joy to arrive. And I hope that it will not be as tough as it seems. Tara, this is my personal mail if you want to share/ask anything Good Luck to all of you...


Reen - December 5

Lory... The gynae seem sure that the baby has bilateral cleft lip/palate. She show us where and how it is in the screen. I don't quite get it, but my husband said that it is pretty obvious if we add our little imagination. I can see the outline of her bottom lip, but can't see properly the outline of the upper lip. So, I take what the gynae said...bilateral cleft! I'm not going to change my gynae. It seems to late to change to a new one, so I will just stick with my current one...


Erik - February 14

Can I please have updates on how everyone is doing? My wife just went for her detailed 20 week u/s. The doctor informed us that the brain ventricle measured 9.3mm, and that he wasnt overly concerned but would like us back in 2 weeks. Needless to say, Ive been a nervous reck since then, doing constant research on hyrdocephulus. Any help would be greatly appreciated. My email is Thanks for any help.


Leanna - February 15

I'll pray for you and Aydan. (We almost named our Noah, 1st, boy, due in April, Aiden-Hee!). I hope everything goes ok for both of you.


Nataliebrooke - November 20

Hi lory... Finally I have hope after reading this thread =) 

had my 20 wk scan yesterday, got sent to another hospital to discuss the findings, I was nervous & scared. Baby is perfect in all ways, organs, measurements ect but her ventricles are 18.6mm which is VERY high... We have been referred to Liverpool hospital for a more in depth scan & because their equipment is much better than the U/S here apparently.

obviously I have been given the worst case scenarios which have broken me inside, I love my unborn baby so much already. 

I'm just hoping that by Monday 23/11 there is some decrease in ventricle size because like my midwife says, babys grow rapidly daily. 

I will keep you all posted x



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