Reply Hey Mom! Learn more about the Gerber Life Insurance Grow-Up Plan!
 
Thread Tools Display Modes
Old 05-10-2012, 07:03 PM   #1
FerventlyDreaming's Avatar
FerventlyDreaming
Registered Users
seller
 
Join Date: Dec 2010
Location: Michigan
Posts: 1,673
Tentative diagnosis: Vein of Galen

Had another apt and U/S and there is a tentative diagnosis for vein of galen. It is not good... http://www.childrenshospital.org/az/...geS1824P3.html

I just feel so tired and dejected at this point. I have spent the time since I got home doing research. I am really worried that the Drs here wont have the experience to care for the baby since this is a very rare condition. I don't want my baby to be the first time they perform the needed procedures. Looks like the hospital I would want to go to is in Boston....I don't know its just too much to even wrap my mind around.

Advertisement

__________________
Megan, Wife to Ron, Mommy to Ben 5-7-09, Grant 4-22-10 Abby 6-16-12 You're so beautiful to think of, but so hard to be without, E no longer in our home, always in our hearts, and Expecting July 2015
FerventlyDreaming is offline   Reply With Quote
Old 05-10-2012, 07:05 PM   #2
FerventlyDreaming's Avatar
FerventlyDreaming
Registered Users
seller
 
Join Date: Dec 2010
Location: Michigan
Posts: 1,673
Re: Tentative diagnosis: Vein of Galen

Oh I say tentative because my Dr is consulting with two other Drs and will get back with me on Monday to ensure that they are all in agreement that this is what it is.
__________________
Megan, Wife to Ron, Mommy to Ben 5-7-09, Grant 4-22-10 Abby 6-16-12 You're so beautiful to think of, but so hard to be without, E no longer in our home, always in our hearts, and Expecting July 2015
FerventlyDreaming is offline   Reply With Quote
Old 05-10-2012, 07:23 PM   #3
andyoly82's Avatar
andyoly82
Registered Users
seller
 
Join Date: Mar 2011
Posts: 1,863
My Mood:
Can you find a hospital that has experience with this and then try and stay by them so you can deliver there?
__________________
Andrea SAHM to Mason dec 09 and oue 12 week angel 2011. wife to my amazing soldier and hero Chris currently expecting our rainbow in AUGUST 2012!!!
andyoly82 is offline   Reply With Quote
Old 05-10-2012, 07:33 PM   #4
FerventlyDreaming's Avatar
FerventlyDreaming
Registered Users
seller
 
Join Date: Dec 2010
Location: Michigan
Posts: 1,673
Re: Tentative diagnosis: Vein of Galen

Quote:
Originally Posted by andyoly82 View Post
Can you find a hospital that has experience with this and then try and stay by them so you can deliver there?
The best hospital is in Boston. We live in Michigan. I will do ANYTHING it takes but I am not sure how we are going to make it work. DH is starting a new job June 4th. We don't have much money right now. (DH has been unemployed for the past two years) So it will be difficult to make it happen. However the results are much better if she is treated early and we will do whatever it takes to make sure that happens.
__________________
Megan, Wife to Ron, Mommy to Ben 5-7-09, Grant 4-22-10 Abby 6-16-12 You're so beautiful to think of, but so hard to be without, E no longer in our home, always in our hearts, and Expecting July 2015
FerventlyDreaming is offline   Reply With Quote
Old 05-10-2012, 07:54 PM   #5
andyoly82's Avatar
andyoly82
Registered Users
seller
 
Join Date: Mar 2011
Posts: 1,863
My Mood:
Mama I would be scared as well. I was just reading about this. You will be in my prayers!!!!!
__________________
Andrea SAHM to Mason dec 09 and oue 12 week angel 2011. wife to my amazing soldier and hero Chris currently expecting our rainbow in AUGUST 2012!!!
andyoly82 is offline   Reply With Quote
Old 05-10-2012, 07:57 PM   #6
andyoly82's Avatar
andyoly82
Registered Users
seller
 
Join Date: Mar 2011
Posts: 1,863
My Mood:
Talk to your insurance maybe they can help alleviate these costs. Can family help? Maybe you can find a dr that will find grants for you guys since its so rare. You may have to allow them to write an article for a medical journal but anything to draw attention to this and perpetuate education for it is worth it.
__________________
Andrea SAHM to Mason dec 09 and oue 12 week angel 2011. wife to my amazing soldier and hero Chris currently expecting our rainbow in AUGUST 2012!!!
andyoly82 is offline   Reply With Quote
Old 05-10-2012, 08:21 PM   #7
FerventlyDreaming's Avatar
FerventlyDreaming
Registered Users
seller
 
Join Date: Dec 2010
Location: Michigan
Posts: 1,673
Re: Tentative diagnosis: Vein of Galen

Quote:
Originally Posted by andyoly82 View Post
Talk to your insurance maybe they can help alleviate these costs. Can family help? Maybe you can find a dr that will find grants for you guys since its so rare. You may have to allow them to write an article for a medical journal but anything to draw attention to this and perpetuate education for it is worth it.
We are open to any option. I am sure our families will help as much as possible and my husband will get his first check July 1st at which point we will be making okay money. Nothing huge but enough to pay our bills and be okay. Currently I am on medicaid but DH is doing research tonight to try to figure out what we should do about health insurance given the situation. We have never bought insurance on our own before it aways came with DH's job. Not sure if they can call this a pre-exsisting condition if we know before the baby is born? I dont know how that will affect our ability to get insurance. Not sure what happens to my medicaid if we get insurance though. The new insurance will not cover my pregnancy most likely so I am not sure how all of this plays out. The cost of going to my High risk office is huge not to mention delivery and all of that.

So the issue is I doubt medicaid is going to cover us getting to Boston Childrens hospital BUT if we get insurance the new insurance will not cover the pregnancy. So I don't know what we are supposed to do.
__________________
Megan, Wife to Ron, Mommy to Ben 5-7-09, Grant 4-22-10 Abby 6-16-12 You're so beautiful to think of, but so hard to be without, E no longer in our home, always in our hearts, and Expecting July 2015

Last edited by FerventlyDreaming; 05-10-2012 at 08:23 PM.
FerventlyDreaming is offline   Reply With Quote
Old 05-10-2012, 08:47 PM   #8
Bella Catalina's Avatar
Bella Catalina
Registered Users
seller
 
Join Date: Aug 2006
Location: Awesometown, CA
Posts: 2,788
My Mood:
Re: Tentative diagnosis: Vein of Galen

ddc. Mama, praying for you and your LO.

Is your MFM/specialist covered by your medicaid (I assume yes)? As soon as your doc gets back to you on the diagnosis, if the doc recommends the treatment as life-saving and Boston as the place you need to be, and sends the necessary info to medicaid, you should be covered. I would discuss with your specialist and find out what your options are before considering other insurance--you cannot be the first person to be in this situation and I pray they are able to help you with approval!
__________________
Bee ~ Mama to boy 1 (04/06) and boy 2 (10/08)
and boy 3 (11/12)
Bella Catalina is offline   Reply With Quote
Old 05-10-2012, 09:13 PM   #9
girlichick's Avatar
girlichick
Registered Users
seller
 
Join Date: Feb 2008
Location: Florida
Posts: 744
Quote:
Originally Posted by mmbreb

We are open to any option. I am sure our families will help as much as possible and my husband will get his first check July 1st at which point we will be making okay money. Nothing huge but enough to pay our bills and be okay. Currently I am on medicaid but DH is doing research tonight to try to figure out what we should do about health insurance given the situation. We have never bought insurance on our own before it aways came with DH's job. Not sure if they can call this a pre-exsisting condition if we know before the baby is born? I dont know how that will affect our ability to get insurance. Not sure what happens to my medicaid if we get insurance though. The new insurance will not cover my pregnancy most likely so I am not sure how all of this plays out. The cost of going to my High risk office is huge not to mention delivery and all of that.

So the issue is I doubt medicaid is going to cover us getting to Boston Childrens hospital BUT if we get insurance the new insurance will not cover the pregnancy. So I don't know what we are supposed to do.
You and your baby should be covered through the pregnancy, and for several weeks after the birth. I am so, so sorry mama. That is a scary situation. I am glad you know now and can plan for the best care for your LO as soon as she arrives, but I can't imagine that that is easy at all. . We will be keeping you and Baby in our prayers!
__________________
*Lynn* Catholic mama happily married to *J*
SAHM to Avé (10-24-07), Matthew :wave2: (12/17/08), Angelina (5/24/10), our angel Abigail (6/23/11) and our newest blessing Ayla Rose (9/1/12)
girlichick is offline   Reply With Quote
Old 05-10-2012, 09:21 PM   #10
pkaskaggs
Registered Users
seller
 
Join Date: Sep 2009
Location: Sealy, TX
Posts: 1,067
My Mood:
Re: Tentative diagnosis: Vein of Galen

i'm so sorry to hear the news. i had never heard of this so i looked it up and found this information...i thought maybe it would be helpful.

"In the past, surgical procedures were used to treat VOGMs, although these techniques were very difficult and often unsuccessful. Today, an alternative treatment called embolization provides significant improvements.

Embolization, in which the blood vessels are intentionally closed, is used as a treatment for many vascular malformations. It may be recommended for certain patients when treatment with surgery is difficult or risky, as is the case with VOGMs, or if the patient cannot have a major surgery because of a medical condition.

Embolization reduces blood flow to the VOGM by obstructing surrounding blood vessels. During this procedure, the VOGM is filled with specially designed coils, glues or spheres, which plug its vessels.

Sometimes several procedures are required, which are performed over a period of months, usually while the baby is under 2 years of age.

Although a VOGM can be a life-threatening disorder, a recent study performed at UCSF showed that the majority of children with this condition go on to lead normal lives after the condition is treated. Children who do not develop heart failure as result of the disease fair particularly well."
__________________
Yvonne --- wife to my computer geek (12 years)
christian homeschooling mama to
BIG SIS(7), LIL BRO(4), and BABY GIRL(2)
pkaskaggs is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

Copyright © 2005 - 2014 Escalate Media. All Rights Reserved.