Head anomaly - 21 weeks (undeveloped brain)

[berry20]

Hi all,

This is going to be a long post... but just wondering if anyone else has been through this?

As of today, DH and I have learnt that our baby’s brain is severely undeveloped. This was initially flagged as a small head at the anomaly scan which prompted an MRI scan. He’s 23 weeks tomorrow, the MRI was done during his 21 weeks. We can’t actually remember the medical term our consultant gave us as we were still in shock. From what we can remember, his front brain is undeveloped and missing pons. We were more or less told the baby won’t live long after birth or will have a bunch of other health issues after birth, so have been advised to explore our options.

However, after meeting with the geneticist, another doctor has insisted we get another MRI at 30 weeks... do you know if this has even happened before? Does this imply things may change by then? This extra scan was mentioned at the last minute so it didn’t occur to us to ask there and then... I just don’t know why we’d be told to get another MRI if there’s no hope of improvement but also don’t want to get our hopes up as the news is heartbreaking enough...

Sorry for the long message and it’s ok if no-one has an answer. We just feel a bit at loss because we don’t know what to do until our next appointment with the dr (at 32 weeks, this doesn’t include the additional MRI at 30 weeks). I also have things in between like glucose test and whooping cough etc in a few weeks, should I still go? I guess we can always wait for the letter from the hospital for “next steps” but just wanted to if we can reach out to someone in the meantime...

Thank you so much for your time 

[MisssC3025]

Hi OP I'm so sorry for the news you've received. I have no experience in this, but didn't want to read and run. DP and I are in a similar situation. Baby has a severe small chest and limbs, so will most likely have undeveloped lungs and won't survive birth. We have decided to continue with the pregnancy. I'm nearing 30 weeks and my anxiety now is through the roof. However, despite the prognosis I'm continuing to go to midwife appts and scans etc.
So I guess it depends on your decisions on what you plan to do with this pregnancy. Remember whatever you do isn't wrong. It's what best for you and your partner.
I can completely empathise with the pain you must both be feeling. Take every day as it comes. I never thought I'd have a normal day when I first found out. Don't get me wrong I cry every day, but I can get on with normal daily things a lot easier than the first month of this news.
Just my anxiety now is settling in as I have 10 weeks until due date... plus this dreaded virus is making things 10x worst.

Has anyone mentioned the charity ARC to you? They're great to discuss what you're going through and support you.

Lots of love OP thinking of you x

[Mseddy]

Hey. Didn't want to read and run. I'm very sorry you are going through this and don't have the answers you need. You mentioned you didn't know the name for your babies condition, I'm a nurse and it sounds to me like anencephaly. Not sure if having the term or not will help. It may not even be the same thing, but I thought I would let you know incase that name sounded familiar and it might help with your research

[Sussexmidwife]

I know that ARC are having a tough time at the moment & have closed their office. I am a midwife specialising in screening & fetal medicine issues. I am very willing to talk through the issues if it might help. PM me is you want to. Sending love xxx