I was just told my baby has a brain tumor... - Mothering Forums

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#1 of 11 Old 06-20-2012, 11:55 AM - Thread Starter
 
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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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#2 of 11 Old 06-20-2012, 11:58 AM
 
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I have no experience but wanted to wish you and the baby well.  I'll keep you all in my prayers.


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#3 of 11 Old 06-20-2012, 12:44 PM
 
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Not personally, but I have a friend whose son was born with a brain tumor that was immediately removed, removing part of his brain. He is 13 now and friends with my kids. He is a little quirky, but a great kid. He is at grade level in all subjects and has friends. He does have some of challenges in life -- I thought he had high functioning autism before I got to know his mom. But overall, doing really, really well.
 

My thoughts are with you. hug2.gif

 

Peace 

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but everything has pros and cons  shrug.gif

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#4 of 11 Old 06-20-2012, 01:26 PM
 
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Our experience was not with a brain tumor, but we did have a poor prenatal diagnosis when I was pregnant with our son, who recently turned 8.

 

My son had a cystic hygroma (a fluid filled mass behind the neck) in utero.  It was discovered during an early ultrasound for size and dating.  We were told that the baby had a 50% chance of surviving to birth and a strong chance of disability if the baby did survive. Obviously we were devastated by this news.  We did not consider termination because it is against our religious beliefs. Most parents pray for a healthy child. We prayed for a living child and the strength to handle whatever else may come.

 

The pregnancy was closely monitored with a series of Level 2 ultrasounds.  The cystic hygroma resolved during the 2nd trimester, but we were still classified as high risk.  Our son was born at 41.5 weeks and weighed almost 8 lbs.  He was declared healthy at birth.

 

My son had developmental difficulties from early on.  He had feeding issues (was unable to breastfeed), was high needs, and was late on reaching his milestones.  When he was 2, we learned that he has mild vision impairments (due to albinism, a pigment disorder). A week after he turned 3, he was diagnosed with autism.  When he was 6 we learned that he has a microdeletion on the 19th chromosome.  This chromosome anomaly is so rare that the doctors cannot tell us the clinical significance of it. 

 

It's been 8 years and we still don't know if the cystic hygroma is related to these other conditions.  We have asked every specialist we know and they all say that the research just hasn't been done.  But my husband and I both feel that there is connection, at least spiritually, is not scientifically.  After all, we asked God to let our child live and told Him that we would accept a child with disabilities if that was His will.  God, in his infinite love and mercy, has held us to that bargain and we are thankful for that everyday. Our son is the light of our lives.  He has many challenges, but he also has several gifts.  

 

When I was pregnant, I found much strength in the stories at this website: http://www.benotafraid.net/  This website is dedicated to families that have continued a pregnancy with a poor prenatal diagnosis.  They are truly inspirational. 

 

Hugs and prayers for you and your family.


Lolly
Mom to an amazing little guy, age 9 (Autism, Hyperlexia, Dyspraxia, Albinism, Chromosome Microdeletion)

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#5 of 11 Old 06-20-2012, 01:40 PM
 
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Oh Lolly that brought tears to my eyes!  Thank you for posting!


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#6 of 11 Old 06-20-2012, 02:12 PM
 
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Sorry you're facing this!  I don't have any advice.  I don't know whether you'd be in a situation where you'd terminate.  We all have different feelings about what we'd do personally.  I would demand any more tests they can do.


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#7 of 11 Old 06-20-2012, 04:56 PM - Thread Starter
 
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Thank you for the responses!  God bless you all! 

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#8 of 11 Old 06-20-2012, 05:44 PM
 
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Best wishes for you and your family. 

 

I'm guessing the doctor tells you about pregnancy termination options as part of his/her duty to inform you of *all* your options (and the time limits of those options), not because he/she thinks that's what you should do.

 

It doesn't sound like there's enough definitive information to know exactly what's going on with your baby, and I know of at least one friend who got scary news at the 20 week ultrasound - they watched and waited and the scary-looking thing resolved within a few weeks and her baby was born healthy. 

 

And, my baby had a brain tumor at age 6 months and I can tell you there are incredible things they can do for kids with brain tumors these days. Medical care can't solve every problem, and can't save every life, and treatment for brain tumors can definitely lead to lifelong disabilities - but: it isn't necessarily a doomsday scenario. 

 

Again, best wishes for you and your family!


Mama to my talkaholic DS (Oct 2003) and my climbaholic DD (May 2007).
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#9 of 11 Old 06-24-2012, 04:59 PM
 
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God Bless your family,
I will keep you in my prayers. I have had a brain tumor and learned that Saint Rita is the patron saint for the healing of tumors. God is amazing in His miracles!I will pray that your baby's tumor is healed and that you are well.
Love, Jennifer
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#10 of 11 Old 06-25-2012, 10:29 AM - Thread Starter
 
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Thank you!!!!.......We hope to have some news today!

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#11 of 11 Old 06-25-2012, 10:30 AM - Thread Starter
 
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How is your son?

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