Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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partyof5now (Sonya) - 464 days ago.
LDMusgrave - sorry to hear that your little girls vent measurments have increased since last scan. I know you said her head circum is 39cm...are your docs saying her head measurement is big for her weeks, small for her weeks or measuring at 32 wks? I know it is hard to wait any more wks to have her out & stuff start being to to see if they can help...just keep telling yourself these much needed next couple of weeks for her organs to develop fully will go by soon, I know the waiting is unbearable tho. Are they going to do another scan before she is born or was this one at 32 wks the last one? I will keep you & your little girl in my prayers.

LDMusgrave - 464 days ago.
Alright, I am 32 weeks pregnant now. To give a quick update, my baby girl was diagnosed with ventriculomegaly at our 20 wk u/s. I had another u/s today and her measurements are now really, really big and scary. Her left vent is 28 mm and the right one is now 63 mm. Her head circumference is 39 cm. and she is head down. The u/s technician said she weighs around 6 lbs. The plan is to do a c-section at 37 weeks, but with these new measurements I got today...... I want her out now.

chinamicf.micky - 465 days ago.
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partyof5now (Sonya) - 465 days ago.
Thanks Ladies, he had a great day & a great party...so blessed to have him in my life

maggiek - 470 days ago.
Happy Birthday Kaden! xxx

turtlemom - 471 days ago.
Happy birthday, Kaden!!!!

LDMusgrave - 471 days ago.
I just read your story about Kaden, how horrifying for them to ask you to consider aborting your son, especially when they dismissed the diagnosis after birth. Happy birthday, Kaden!

partyof5now (Sonya) - 471 days ago.
My son Kaden is 1yr old today! At one point a day I thought we might not ever see, thankful everyday that my doctors were wrong about my little guy, thankful everyday that we didnt listen to my docs & do what they suggested of late term abort due to his diagnosis. Everyday has been a blessing with him, thanks to all who stuck by & offered moral support all those months ago while I was pregnant with him & going thru everything...I dont think I would have made it here without your encouragement. Miracles do happen :o)

partyof5now (Sonya) - 473 days ago.
Thats great news!

maggiek - 477 days ago.
I got my results from my MRI back yesterday when I went for my pre natal. According to the MRI the vents have shrunk... Which is great. Not sure why I had to wait 5 weeks though!

partyof5now (Sonya) - 477 days ago.
maggiek - I received the news from our MRI the very next day...I think I would jump on your doc to figure out what is going on because it shouldnt be taking this long at all

LDMusgrave - 478 days ago.
Maggie, I was given MRI results about an hour after it was done. That's really strange that you still haven't received results.

maggiek - 479 days ago.
Went for my 4th Ultrasound today at 28 weeks. Doctor said everything looks good, although she wants me to come in for another Ultrasound at 32 weeks. I've not even got the results back from my MRI that I went to 4 weeks ago!

perle - 484 days ago.
hi everyone, i'm new member of this site & forum, i'm 26 weeks pregnant new-mom-to-be, & this is my first pregnancy. i'm from indonesia, so pardon me for any mistaken english :) Around 2wks ago, my docs was doing our routine US, but this time with the 3D/4D machine. And he found out a suspect choroid plexus cyst or CPCs, in my baby's brain, so he refer me to another docs for a 2nd opinion. So 2 days ago, october 19th, i went to this 2nd docs, and he said that my baby had VM, left brain 10mm, right brain 16mm. but the other organs is normal, no other anomalies, and the baby is normal & very acitve, i even saw her yawning :) :) :) I really have no idea what was it, because 2 weeks ago i was looking for as many info for CPCs, and suddenly now this VM! I already done TORCH test twice, and also a down syndrome test on my early stage of pregnancy, both results are good. Now i still wondering why, what cause this VM? but the docs don't have the answer. the worst part is, i cannot do anything , just have to wait... and it's torturing me! I was down, and very stressful, and cried, and i tried to gathered as may infos from the internet, and luckily, i found this forum right away, it really help me to calm down. I say it from the bottom of my heart, thank you all so much for sharing your story, & encouraging each other this way, including me. And i also has such a big-heart hubby who is very supportive in this my low-life moment. Now i will try to think positive, and, according to this one quote from this forum, BELIEVE IN YOUR BABY, I know my daughter is a fighter & i will fight with her, most important thing that we still can do is pray to God, He said that 'Ask, and it shall be given you', and keep our faith that miracle do happen :) I will catch you all from time to time, and thank you all once again for everything, XOXOXO

turtlemom - 490 days ago.
Plus, Duke is a public bank. The storage is free. If you use it, they will charge for the infusion. I agree with Brad, you should at least ask about delivering there.

turtlemom - 490 days ago.
Hi Ldmusgrave, I found a site where you can post your story and get donations - http://www.dallashextellfoundation.org/. This little boy (Dallas Hextell) is another Duke miracle. It is worth a try!

LDMusgrave - 492 days ago.
I am a shift manager at Taco Bell, I make 9.15/hr. My husband is a support manager at walmart. He makes about 10/hr. We don't have health insurance currently. Our companies don't offer good insurance, but we are looking to choose one or the other just to have something. Medicaid is covering this pregnancy. The lady on the phone from Duke said the procedure would cost about $14,000.

brad-and-amy - 492 days ago.
LDMusgrave - We have been talking to Duke, too. (In fact, we just got back from there yesterday!) We have United, which we have been told has paid for the treatment in the past. One other thing we were told that you might find helpful: If you deliver at Duke, some of the costs associated with the cord blood re-infusion will be rolled into your post natal hospitalization costs (e.g., work-ups, outpatient care following the re-infusion). We are planning to deliver at Duke because we think it gives our baby the best chance to get the transfusion as early as possible. We are in Atlanta, so it will be a trek, but we are planning to schedule a C-Section (if the baby cooperates). Have you thought about delivering there?

LDMusgrave - 498 days ago.
Here is an update on our baby's situation. We had our fetal MRI today. The radiologist and his colleagues all agree on two things. One being that she does not have holoprosencephaly. The second being that her ventriculomegaly is caused by aqueductal stenosis. The neonatologist I spoke with appeared to be very hopeful. This is the best news we could have received today. :)

turtlemom - 501 days ago.
ldmusgrave- There is a Hydro board on Babycenter.com and there are several other babies that have been to Duke there. You may have more luck finding other insurance groups that have paid.

turtlemom - 501 days ago.
My daughter has been to Duke for the infusion twice. I think we may be the only ones on this board who have been? Our insurance paid for it (First Administrators - a small payor). But, we were prepared to pay out of pocket. I would have paid a million bucks a million times over to do it. I whole heartedly believe it was a miracle for us.

LDMusgrave - 501 days ago.
Hi everyone. I live about a 3 hour drive away from Duke. I also looked into getting the cord blood transfusion for my daughter. I am determined to have this done for her, but the lady on the phone told us it would cost around $14,000. She also said there is no way to tell which insurance policy will guarantee payment. If one of you moms have had this done for your child at Duke can you please message me or leave a post on here to help better guide me to an insurance policy that this will work with? I have a little time to get this figured out, currently 27 weeks pregnant.

laila10 - 501 days ago.
Hi every body!! hope every thing all right with all moms! we went for MRI ad the results showed that VM has been enlarged to 15-16 mm, and it is isolated, but the doctor told us lots of possibilities and we have to wait till baby's birth! ( now I'm 38 weeks) I'm wondering if the baby is born and this liquid does not go go down, she will continue having that issue all her life or what? we still didn't have amnio tests an I decided that genetic tests better to be done to the baby when she is born. But among the possibilities it could be Down Syndrome or cognitive disabilities, I 'm really so upset , getting worried before delivery, if someone has a case of child's disabilities that not related to genetic factors but only for having enlarged VM please contact me!! thanks a lot. May God bless u all!

brad-and-amy - 508 days ago.
LDMusgrave, It sounds like you have a very similar situation to ours. At 20 weeks 2 days, our baby (Claire) was measuring at 21mm and 17mm and the head was measuing at 22 weeks 2 days. We are going for a follow up US tomorrow. Our doctor thought it could be lobar holoprosencephaly but the MRI ruled that out. He thinks it is aqueductal stenosis but the VM is severe. We are currently at 23 weeks 1 day. If you want to follow along with our updates, www.prayersforclaire.blogspot.com

sfh5183 - 509 days ago.
Alex is 10 wks old in the NICU having trouble with his shunt. They revised it twice and now has an external ventricular drainage system that had be be revised once and is not working again! His protien levels are so high that everything keeps clogging up....Anyone have any similar experience or have any advice?!?!