Was told my baby has a brain tumor, has anyone been told this?? What was the outcome?? - Mothering Forums

Forum Jump: 
 
Thread Tools
#1 of 15 Old 06-20-2012, 11:47 AM - Thread Starter
 
javinjen's Avatar
 
Join Date: Jun 2012
Posts: 7
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I am 20 weeks pregnant and I had a level 2 ultra sound and was told my baby girl has a large brain tumor.  The tumor is 20% of her brain and is pushing the cerebellum down.  My Down syndrome test results came back abnormal .5% 1 out of 175 chances.  Therefore they did an amniocentesis, should have results Monday.  Then I did an MRI to take a better look at the baby’s brain/tumor.   The doctor told me chances are slim she will live after birth and told me I have the option for termination until 24weeks.  

So...the amniocentesis results came back normal so she is free of any down syndrome...Yeah....Then the radiologist said there was no tumor found...However the doctor said obviously we saw something on the ultra sound so he had another radiologist in town take a look and he agrees there is an abnormality.  Doctor is sending the Ultra sound and mri images to a few different specialists that deal with fetal brain tumors and brain abnormalities.  Hopefully we get some results soon.

I was so upset at the beginning and unsure of what to do.  I’m feeling a bit better now.  We are trusting in the lord for divine healing and keeping faith in his power to heal.  There is a reason this is happening to us.  We have named her Cataleya Grace and are looking forward to meeting her. 

Has anyone been told there was a tumor and it turned out to be something way less serious or maybe even disappeared??

javinjen is offline  
#2 of 15 Old 06-21-2012, 08:44 AM
Administrator
 
cynthia mosher's Avatar
 
Join Date: Aug 1999
Location: Arabia!
Posts: 38,907
Mentioned: 15 Post(s)
Tagged: 1 Thread(s)
Quoted: 104 Post(s)

I'm so sorry to hear this. I'm sure it is a difficult thing to be dealing with. I'm going to move your post to the I'm Pregnant forum where you might get better feedback. 


cynthia mosher is online now  
#3 of 15 Old 06-21-2012, 09:04 AM - Thread Starter
 
javinjen's Avatar
 
Join Date: Jun 2012
Posts: 7
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thanks.....I think this site is a but hard to navigate
javinjen is offline  
#4 of 15 Old 06-21-2012, 07:04 PM
 
Shiloh's Avatar
 
Join Date: Apr 2005
Location: listening to kriping churckets
Posts: 6,796
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

My friend's baby was dx with hydrocephalis (sp) by two different ultrasounds.

They gave her a C-section at 8 months - oops nothing wrong.

ALWAYS get a second opinion.


8 might be enough
Shiloh is offline  
#5 of 15 Old 06-21-2012, 07:21 PM
Administrator
 
cynthia mosher's Avatar
 
Join Date: Aug 1999
Location: Arabia!
Posts: 38,907
Mentioned: 15 Post(s)
Tagged: 1 Thread(s)
Quoted: 104 Post(s)

javinjen, please let me know if I can help you in anyway with navigating the site. You can email me at administrator@mothering.com


cynthia mosher is online now  
#6 of 15 Old 06-23-2012, 05:22 PM
 
faithsstuff's Avatar
 
Join Date: Nov 2008
Posts: 538
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Hugs, all the hugs.  

faithsstuff is offline  
#7 of 15 Old 06-28-2012, 03:57 PM
 
MeAndVee's Avatar
 
Join Date: Sep 2007
Location: NC
Posts: 197
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

My sister had/has a tumor.  I forget what its called exactly.  Sudo?  Because of the location within the brain they didnt remove it.  She is a normal adult now with minor tremors.  She has to have MRIs to make sure it isn't growing.   I just want you to know it is possible to have a positive outcome no matter how dire it looks right now.  I too would get that second opinion.  Doctors get things wrong.  DS2 was suspected of having a transfacial cleft and I was sent to a secialist and turns out he doesnt.  You and your LO are in my thoughts. 


Catherine & Baby Vee
Mama to Vinayak {8/2007} & Married to Sridhar {11/2001}
MeAndVee is offline  
#8 of 15 Old 07-31-2012, 04:48 PM - Thread Starter
 
javinjen's Avatar
 
Join Date: Jun 2012
Posts: 7
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

 We visited The Fetal Treatment Center at UCSF Children's Hospital which is the world leader in diagnosing and treating birth defects while the fetus is still in the womb and is internationally recognized for advanced therapies, including fetal surgery. It is the only institution in the world where some of these innovative fetal surgeries are performed.

 

They confirmed that the baby has a large vascular tumor.  It is 20% of her brain.  It's smashing her cerebellum because of the tight space.  They also noticed that her brain stem is thinning.  The brain steam controls the breathing and the cerebellum not only controls balance but speech as well. 

 
It is very serious and chances of her living are so very rare.  They have offered us the option to terminate.  They have seen these vascular tumors before but at a very very smaller size and those children didn't live.  There is also chances it is cancerous
 
However today my husband and I decided to let nature take it's course.  We are strong and so is she.  We are not going to terminate the baby.  We will continue to pray and keep our faith.  On Thursday I will be 6 months 3 weeks.  Every kick every movement I will Cherish...
bloodofthefae likes this.
javinjen is offline  
#9 of 15 Old 07-31-2012, 05:01 PM
 
Adaline'sMama's Avatar
 
Join Date: Apr 2010
Posts: 4,787
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

:hug

 

I couldnt read without posting. I'm so sorry you have had to face this news.


Holly and David partners.gif

Adaline love.gif (3/20/10), and Charlie brokenheart.gif (1/26/12- 4/10/12) and our identical  rainbow1284.gif  twins Callie and Wendy (01/04/13)

SIDS happens. 

Adaline'sMama is offline  
#10 of 15 Old 07-31-2012, 05:35 PM
 
bloodofthefae's Avatar
 
Join Date: May 2012
Location: Springfield, Mo
Posts: 12
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

*hugs hugs and hugs momma*

You will be so blessed in any and everyway by your baby! Keep faith and i will keep you all in my thoughts. 

 

My neice was born with a condition that they said "no one has lived" she is now 2 years old and in remission. *HUG HUG HUG HUG HUG*

javinjen likes this.
bloodofthefae is offline  
#11 of 15 Old 08-01-2012, 11:46 AM
 
PrettyHippie's Avatar
 
Join Date: Oct 2009
Location: In the Ohio woods!!
Posts: 148
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Thoughts and prayers are with you and your little one.  Never give up hope and cherish every.single.moment.  hug.gif


Rachel(29)treehugger.gif Crunchy, granola wife of Matthew(30)reading.gif, DD Willow(5yrs)energy.gif, DS Ronan(2yrs) superhero.gif, Ivy Spring 12/29/2009 lost to Hydrops at 20 weeksangel3.gif, 2 other angel.gif and DS Canaan(1yr) kid.gif.  Holy Cow!!! jaw2.gifDue with someone new July 2014!!! joy.gif
PrettyHippie is offline  
#12 of 15 Old 08-01-2012, 03:16 PM
 
BetsyPage's Avatar
 
Join Date: Mar 2004
Location: In a thicket
Posts: 1,382
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

(((hugs))) I am so sorry that you are going through this, will pray for you & your little one... I'm glad you are choosing to cherish every moment!!!


An extrovert, married to my introverted dh since '01, mothering my girls C (2003) and G (2006).

 

Love homeschooling, reading, cooking (most of the time grain-free except for when I'm not ), lactivist, former and wanna-be cloth diaperer and baby-wearer...

BetsyPage is offline  
#13 of 15 Old 08-03-2012, 03:14 PM
 
tiqa's Avatar
 
Join Date: Feb 2012
Posts: 503
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I know this is no consolation to you because your situation is obviously different, but DH was born with a brain tumor as well.  Obviously it's not as big as your baby girl's, but it's on the brain stem.  He has quite obviously lived a productive life...  Wishing for a peaceful outcome for your family.  *hugs*

javinjen likes this.
tiqa is offline  
#14 of 15 Old 08-03-2012, 05:51 PM
 
faithsstuff's Avatar
 
Join Date: Nov 2008
Posts: 538
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

grouphug.gif I hope you have a time of peace during all this.

faithsstuff is offline  
#15 of 15 Old 08-03-2012, 06:25 PM
 
LLQ1011's Avatar
 
Join Date: Mar 2012
Posts: 1,008
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Sending you so much love, and prayers to you r and your family right now!
 

LLQ1011 is offline  
Reply

Tags
Mothering Help

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may 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
Trackbacks are On
Pingbacks are On
Refbacks are Off