Considering late medical termination

[Olla85]

Our baby has been diagnosed with Dandy Walker Variant on 20 week scan, confirmed at level 2 scan.

They cannot see vermis and the left hemisphere seems much smaller than the left one. They also see a cyst by the smaller hemisphere.

We were offered termination and the doctor said the baby could be severely handicapped. We went back to the hospital to have the procedure started but we had so many doubts, they instead run blood tests, amnio and and arranged for MRI (in 4 weeks!!! I am 22 weeks now!).

I am struggling to come to terms with termination as I do not understand the possible outcomes and it's been told that RARELY some people could live with the condition and not even know, however also I was told the doctor would be very worried about the outcome for our baby if we kept the pregnancy and that we would need to consider Foster care/care homes etc...

I am severely confused. Any helpful advice?

I dont know anything about the condition, just wanted to give a handhold

I don't know anything about this at all but just wanted to say I feel very sad you are in this situation. In your place I would not wait another four weeks for a termination.

I am sorry for the situation you find yourself in. I am wondering if you will find parents with experience of Dandy Walker Variant if you include this in the title and post in the children's disability section? I am sorry I don't have any advice about the decision you now have to make but I wish you peace in whatever you decide.

Dear OP,
I am so sorry that you find yourself in such a difficult position. I don’t know anything about Dandy Walker Variant but would suggest you make contact with the charity Antenatal Results and Choices who can offer you support and objective advice:

www.arc-uk.org/

Take great care xx

I’m so sorry you’re in this position.

I couldn’t wait another four weeks for an MRI. I’m 24 weeks now and baby has started to move loads more recently, it’d be so much harder now. Is there any way to get that sooner?

I have no advice but I wanted to handhold

The wait is agonising but they said MRI cannot be done any quicker and I don't know what other answers I could get anyway.

I feel the movements constantly I go back and forward on the decision, in particular due to such a variable possible outcome.

I would never want to give a child a lifetime of suffering - being severely handicapped is a terrible option. In the same time there apparently are rare cases with no symptoms.

How can I ever make a decision being served this sort of unknowns not answers?

I don't see the need for an MRI scan when the variant has been confirmed. All that is happening is postponement of the inevitable. It's a terrible situation for you to be in right now and I can't see that four weeks will make it better. I really wish it would .

@Olla85 just wanted to say I am thinking of you. We had a 3.2mm measurement at our 12 week scan today and I’ve been looking for stories on here to reassure me but it’s all so sad :( ..
It’s a tough decision but follow your gut. Don’t feel pressured by the medics one way or another. It sounds like you have a happy and healthy baby, kicking away in there. Sending positive thoughts 🌸

Having done my research it looks like the prognosis for a baby with malformed cerebellum is very poor unfortunately. We are still waiting for other tests and this is agonising but simply need more evidence.

We had a 3.3mm and low pappa (

oh I really cant imagine what you are going through, please try and be kind to yourself and recognise what you are feeling is so valid xx

@Olla85

The wait is agonising but they said MRI cannot be done any quicker and I don't know what other answers I could get anyway.

I feel the movements constantly I go back and forward on the decision, in particular due to such a variable possible outcome.

I would never want to give a child a lifetime of suffering - being severely handicapped is a terrible option. In the same time there apparently are rare cases with no symptoms.

How can I ever make a decision being served this sort of unknowns not answers?

Yes, there are things you don’t know. But there is a lot that you know as a matter of certainty. That the vast majority of babies end up with complications, and that a life with severe disability can be extremely painful, emotionally as well as physically. I would get the termination. Go with what you do know.

Hello OP. I haven't been in this situation but when it's a spectrum condition and you don't know where on the spectrum the baby might fall, my advice would be to decide based on the assumption of a worst-case scenario.