pregnant with a baby who has a brain abnormality

Break it off? I won't judge, but I do think that's pretty intense.

What I know is that most children hardly experience anything from this disease. A slight delay in some areas like motor skills does occur, I believe (but not always), but it's not like you're getting a disabled child. If you test 'normal' people here, I think you'll find that too.

So I can understand why a hospital wouldn't want to cooperate with this. I think it's really frustrating for you guys. I hope you'll find a good solution anyway.

Hi Marijke,

That must be such a tough decision for you both. What do you want? Have you already received information or looked it up yourselves? Stay strong and don't let anyone steer you away. Do you already know what you want? Do you want to let the baby come?

Whatever you decide, do it together.

Wishing you lots of strength in the coming days, and feel free to let me know what you've decided, only if you want to, of course.

Love, Ju

Oh Marijke,

That's such a tough decision.
I don't know what this condition means, but I hope you find something useful in the story above.
I can imagine it's really heavy to find out you're having a disabled baby, especially when you already have two.
But it's your baby that you've been carrying for quite a while now.

Think it over carefully with your husband, do this together, and lots of strength and good luck to you.

If Belgian hospitals can't help you with terminating your pregnancy (here the limit for abortions is 3 months), then it just has to be that way and you'll have to accept it. Everything has a reason and nothing happens by chance.
And that's how I personally feel about it.

hey,
just wanted to ask, does your nephew have a malformed brainstem or no brainstem at all??
thanks in advance.

nothing happened by chance??
some things happen, I think, outside of your own control, and if it's nature, you can't really do anything about it. and just giving up, believe me, you don't just do that

That's so tough for you all, but as mentioned above, make sure to carefully consider what this means for the baby and whether the baby will have a decent life. Wishing you all the best with your decision and keep us updated.

I don't really know much about it myself.
Make sure you're well informed about what and how.
This is a decision that only you can and should make.

Good luck and strength with the choice. Just make sure you decide together and fully support that decision.

Wishing you all the best.

I just want to say... we lost our first baby at 24 weeks. That wasn't a coincidence. Everything happens for a reason. It was decided that way for us. Not by the doctor, but by nature. We didn't choose it, but there was a chance that if she survived, our girl would be blind or have a learning disability. But even if that were the case, I would have been super happy if she had stayed alive. The children who are born don't suffer from their conditions; they only suffer from our pitiful fussing, because we think, "Aaaah, you have to see him/her, such a life is really terrible." And they are treated as such without us even being conscious of it. I think it might be better if you go to other hospitals and ask what exactly that corpus callosum abnormality entails. Maybe it's not as bad as it seems, and then you'll make the wrong choice. Once you've decided, it's decided. Once your baby is out, it's out, and you can't turn back time. If you ever read somewhere that it's not as bad as it seems, you'll never forgive yourselves. So think very carefully before you leave for Paris tomorrow.

We have a 12-year-old daughter who doesn't have a corpus callosum, and she's developing well. She's in special education but will be able to go to VMBO later on. She's a lovely, sweet girl!

It can also be the case that children without a corpus callosum have many physical and mental problems. I can imagine that you're now faced with a lot of questions and a difficult choice. We only recently found out that our daughter doesn't have a corpus callosum—it was pure chance that we found out, and I'm really glad I didn't know earlier. Otherwise, I wouldn't have been as relaxed about her development as I am now. I wish you all the strength. Julie, you've probably already made a choice, and I hope you're at peace with it!

I have a daughter myself who has no corpus callosum. She's a cheerful baby and is doing really well. And whatever her future holds, as long as she stays happy!

Please think carefully about this!
As several stories above show, it's possible to live with it; both for you and for the baby itself. I'm 101% in agreement with Maaike (guest). Whatever the future brings, as long as he/she is happy.

There are a lot of people who can't have children, and you'd just abort your pregnancy for something that isn't even fully clear yet... I understand your side, but on the other hand, I find it quite selfish. (Sorry!)

Good luck!

grKruimel

They talk about terminating the pregnancy but it doesn't happen at the due date, you just go into labor. Only instead of doctors fighting for the baby's life, they let it die now.

If the hospital won't help you, that says more than enough. Our son didn't breathe at birth and was therefore resuscitated. We were always told to expect that because he had a long oxygen shortage, he'd have some lasting effects in some form, but they couldn't specify. Do we as parents just have to say, well then I don't need him anymore? No, you fight for your child, and it doesn't matter one bit whether it's an unborn or born child!!

I completely understand you, and I think people who don't have a child with a disability don't understand how it takes over your life. Your whole life will soon revolve around caring for #3... and what about #1 and #2?? I really understand your dilemma.

You don't bring a child into the world just to have to put them in a care home in about 10 years because you can't provide for them yourself, since caring for a disabled child becomes too heavy for a parent at home. Besides, you don't know how severe the disability will be. Maybe it's 'just' a motor impairment or growth delay, but learning problems, epilepsy, behavioral issues, and seizures can also occur. The downside of corpus callosum agenesis is that no one can tell you how severe it will all become. It could indeed turn out to be manageable..

This is a decision you personally have to make; no one can help you with that, but don't let yourself be influenced by people who say "you wouldn't do that" "it's a living human being" or "be glad there are people who will never have a child". These people don't have to care for your child; they write this here and then forget about it, go back to their 'normal' lives, but still have an opinion about parents in this difficult situation...

I wish you all the best with the further tests and with the difficult decision you have to make and the time ahead. I know that in the Netherlands, for certain disabilities, abortion is still possible at a late stage.. (you get an amniocentesis at 16 weeks, the results take about 4 weeks, and after that you still have time to decide whether you want to keep the baby or not...)

I just want to emphasize that I’m sharing my opinion based on the knowledge you have about the unborn child...

@linda I completely understand you. I also completely understand the lady who started this topic, and I understand that you'd want to terminate a pregnancy if you're not that far along and something is seriously wrong with your baby.

But this baby is practically ready. There was a 20-week scan, followed by several more tests that didn't all happen in one day.. a baby is viable from 24 weeks onwards.. there may be many issues, but it is viable..

Personally, I think it's way too late to terminate the pregnancy. I'm not against abortions, and the choice is always yours, but I just don't think it's okay at this stage.

I have to say it's a bit harsh of you to say that other girls who responded here have 'just' forgotten about it. There are girls who were in exactly the same situation and took responsibility.

I might have an easy time saying this because I don't have kids myself yet, but I don't think -no, I'm sure- that I would terminate a pregnancy at this stage.

Greetings

And besides, if you post such a story on a public forum, you should expect answers like mine. I won't judge whatever choice they make, but I do have an opinion.

Hi

First of all, I want to say that I have a lot of respect for the work you do! Really super.

I also understand what you mean. It will undoubtedly be very hard to raise a disabled child, especially if it's not your only child and you have 2 others running around.

The examples you give about Christmas and birthdays, I find quite sad (not from you but from these parents!!)
If you get a disabled child, whether you know this during your pregnancy or only during or after birth, you as a parent should do everything for your child.. just like that dad you mention in your story. You should take 100% responsibility for your own child, and if the best care can be found, you do that. But you should also take responsibility and spend time doing fun things with your child!
My former neighbors have a daughter who is the same age as me, 21 years old now. This girl is also multiply disabled. She can't talk, can't see, can't walk, can't hold anything.. basically nothing except lying in her wheelchair. These people had another healthy son after her and when the girl got older, they had their whole house renovated and made a whole space downstairs to keep her at home.. all the adjustments she needed were there. From this I conclude that it is definitely possible!!! Her mother was already a nurse maybe that helps, I don't know.

On your question who would do you a favor: well.. if you put it like that I can't answer that. I'm not that knowledgeable about the care for a disabled child. As long as you, as I said above, take 100% responsibility for your child (whom you chose yourself!!!), it will be doable for both of you. It's hard but doable.
Having an abortion at 8 weeks or so, okay... but you're not going to let a viable child be born only to have it die. Personally, I find that much worse than "putting" your child in a care facility.

xCrumb

Linda33: I totally get what you mean! Her first two kids are still there too. When a disabled baby comes along, the first two kids often have to give up a lot. They end up being the ones who suffer.

We always said everything was welcome with the first one. With the second, we thought differently. What if the baby is disabled? We certainly want to take care of it, but that's not the only aspect. You also have to consider your first child. What if both parents pass away later on? Then you're essentially forcing your other child to care for their sibling. All those kinds of things.

Due to a very serious abnormality, we had to terminate the second pregnancy at 21 weeks. The baby was incompatible with life, and if the baby had survived, she would have lived at most one year, with a lot of pain.

It's very easy to talk about whether to terminate or not for others, but it's always a waiting game when you're in that situation yourself, crumbs. I understand you, you know. As you can see, I also thought very differently about it with the first one... And it's really good that someone like Linda33 shares her real-life experience. People can learn from that