3rd trimester
pregnant with a baby who has a brain abnormality
Replies
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trotsemama #21
Oh Crumb: Aren't you one of those people who have to put in so much effort? With Clomid, etc.?
Then indeed, topics like these will hit you hard! -
kruimel #22
I agree, proud mama, experience stories are always good to get a better picture.. And you're right; it will be very different when you're in that situation yourself.. And maybe it's different for the first one anyway than for a possible 2nd or 3rd.
I just find it hard to understand doing something so drastic for something that isn't clear at all yet..
And yeah, maybe I am a bit harsh / I take it too hard because it's not working out for us.. I'm tense from the hormone pills and then it hurts to read that someone has to go through so much trouble to have a baby terminated while it's exactly the opposite for me.
x -
Linda33 #23
Oh crumbs, sorry, I didn't know that.. Good luck!! And sorry if I hurt you with my directness.. -
kruimel #24
No, Linda, it doesn't matter.
If I couldn't handle it, I shouldn't react to it, right?
But maybe now you understand my opinion a bit better!
xKruimel -
Linda33 #25
Totally!! -
kruimel #26
Hi everyone,
There's an article on NU.nl about the 24-week limit for abortion.
Might be interesting to read? It mentions among other things what the conditions are for terminating a pregnancy at a later stage / when it is and isn't 'allowed'. I read it and immediately thought of this topic. Unfortunately, I can't share the link!
xKruimel -
trotsemama #27
Hi Magda,
It’s indeed a really tough decision. Mothers probably already have a sense of whether it’s right or not. (That’s my experience.) We also had to make a difficult decision for another reason two years ago (triploidy). Because of that, I can say that it’s very important for the people around the parents to give them space and time, and to support them. One more tip from my side: if they decide not to let the baby come at 9 months, make sure they talk about it, and as people around them, never forget the baby.
I wish the parents lots of strength during this difficult time. -
Laila Guest #28
Dear readers,
I am 22 weeks pregnant, my baby is missing the corpus callosum and has a tumor in his neck. I want to terminate the pregnancy; is that allowed according to Islam? Am I committing murder? The tumor is growing! -
[email protected] Guest #29
Hi Marijke,
I don't know when this post is from?
I'm missing part of the corpus callosum; it was discovered when I was 9 years old. I'm now 43.
I read that someone called it a disease here. That's incorrect. It's a disability/limitation. Not everyone has the same symptoms. Some struggle with learning, while others attend university. My parents were once told that I was one of only three cases in Europe. I searched for a long time, looking for people who have this too. After years of searching, I found two adults in America who are around my age. -
PH-BOB Guest #30
Dear Marijke,
We have two boys, aged 14 and 5, both with a brainstem abnormality.
Our 14-year-old son has a malformation in his brainstem, and the youngest, aged 5, is missing 99% of his brainstem.
If I were to come for coffee, you wouldn’t notice anything wrong with either boy.
So, in my experience, I wouldn’t consider ending your pregnancy.
You’re always welcome to send us an email for more information.
Best regards,
Nico Hes ([email protected]) -
Anonymous Guest #31
I completely miss that little brain bar and I do have complaints, but I studied at the university, for heaven's sake... I'm so glad it wasn't seen on the ultrasound, otherwise my parents could have aborted me... great. Even though there is an issue due to its absence, I'm now a smart and lovely 34-year-old woman who didn't get the support I would have needed in my childhood, but I'm really a decent person despite that, so I personally find it shocking to read. So that had to come out. -
Wetslandsefries Guest #32
Hi there,
I also have a child without a corpus callosum. We found out at the 20-week scan and went through hell. We were advised to terminate the pregnancy, but then at the next hospital they contradicted that. Luckily, we kept the baby. She just turned 2 years old. She's a cheerful girl; she's a bit behind with talking, but she was also behind with crawling and walking, which she can do now. In other areas, she's actually ahead, like sharing. She does crafts for older kids and understands everything very well. Still, I'm very unsure about what the future holds for us.
I don't know if you terminated the pregnancy or if the child is already born (sorry, I didn't read everything), but I'll look into whether it's hereditary. It turns out that if it is hereditary, the child might have more problems than if it's not.
I'd like to get in touch with more moms or dads who have a child without a corpus callosum. Just to talk about it, because there's so little known about this. What can I expect, etc. Maybe not the best idea, but here's my email address: [email protected] -
linda75 Guest #33
The posts are a bit older, but I still wanted to reply. I have a son with ACC. He's now in bridge class for havo/vwo... Yes, he's not a standard student, his pace is a bit slower, and he finds social interaction difficult, but he's very happy and has a few friends at school (regular education).
We also faced this choice 13 years ago. It was very difficult because as long as the child isn't born, you have no idea at all what the consequences will be for the child. It often comes with other syndromes, especially in girls. Fortunately, our son has an isolated form! We were given the choice in the hospital at 20 weeks... They thought our choice was brave. There was nothing brave about it because I didn't dare make the other choice at all.
I'm very happy with our choice! -
LW Guest #34
Hey,
Hey, we didn't get very good news... I'm now 30 weeks pregnant and was due to give birth to a healthy baby on November 7th, but we found out on Friday that our baby has a small heart defect. The left ventricle is a bit smaller than the right one, causing the aorta to be 9/10 narrowed, and it will need to be operated on very soon after birth. Then they also found something in the brain... The corpus callosum (the brain's bridge) doesn't seem to be fully developed, so the connection between the left and right sides of the brain isn't being made. Now they're going to do extensive tests, like an amniocentesis, to see if this is due to a syndrome (the 12-week Nipt test was excellent), but this test is 100% (also carries a risk of miscarriage), and after that, they'll do an MRI. I'll have to go to Leuven to see a pediatric neurologist for further examinations and such... We're going through hellish weeks and don't know what's waiting for us right now! I'm also getting psychological support. I'm already so far along, and we hope for a healthy baby; everything was always super good, and now they've found something like this that we can't comprehend. We're just devastated! I just wanted to let you know.
We already have a son who is 2.5 years old and perfectly healthy...
We're going through a very difficult time now... I'm looking for some support from others in the same situation. -
Sonja Guest #35
Hi,
my son also didn’t have a brain stem. We were extremely worried during the pregnancy and after. Now he’s 17 and there’s no sign of any issues. So this can happen too! -
Esmee Guest #36
Hi hi, I'm 15 and have corpus callosum agenesis (missing the brain's connecting bridge). I've never really talked about it in public, but yeah, that's not what this is about. I go to a special needs school and have a few other things too. I know my mom sometimes finds it hard to understand me, but she does. I just feel good and stuff. I just need more time to learn things, and there are a few other things, but yeah.
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