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

post #1 of 15
6/20/12 at 11:47am
Thread Starter 

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??

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post #2 of 15
6/21/12 at 8:44am

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. 

post #3 of 15
6/21/12 at 9:04am
Thread Starter 
Thanks.....I think this site is a but hard to navigate
post #4 of 15
6/21/12 at 7:04pm

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.

post #5 of 15
6/21/12 at 7:21pm

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

post #6 of 15
6/23/12 at 5:22pm

Hugs, all the hugs.  

post #7 of 15
6/28/12 at 3:57pm

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. 

post #8 of 15
7/31/12 at 4:48pm
Thread Starter 

 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...
post #9 of 15
7/31/12 at 5:01pm

:hug

 

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

post #10 of 15
7/31/12 at 5:35pm

*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*

post #11 of 15
8/1/12 at 11:46am

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

post #12 of 15
8/1/12 at 3:16pm

(((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!!!

post #13 of 15
8/3/12 at 3:14pm

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*

post #14 of 15
8/3/12 at 5:51pm

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

post #15 of 15
8/3/12 at 6:25pm

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

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