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Help, somebody , please.

(17 Posts)
RangerMummy1 Wed 31-Aug-16 07:35:02

Sorry - super long post alert!

So had 20 week scan on Friday, they identified a number of abnormalities with the brain - excess fluid, lemon shaped skull, small head measurement and couldn't see a cerebellum. Couldn't see all the spine to say if spinal related. Then went back yesterday for more detailed scan with fetal medicine specialist - basically she confirmed most of the above but thought she might be able to see the cerebellum. If that's what she was looking at it is severely deformed, but may also have been ordinary brain tissue she was looking at, couldn't say for certain. She then spent a long time looking at the spine to see if she could find a hole - indicating Spina Bifida - but again she couldn't say for certain that she had found anything (very minuscule bulge that would normally be overlooked as normal spinal development was only thing she could see as possible hole).

The outcome of all of this is that we know our baby will have severe physical and mental disabilities - best case scenario it is spina bifida at it's most severe (specialist thought this was most likely, but mainly because alternative is even rarer), but could be something much worse if in fact it is an isolated brain issue and that was not a cerebellum that she could see. So we're left with the choice of carrying on with preg and having a child who will almost certainly have no real quality of life or terminating the preg - how the F*£& do we even think about making that decision??

Sorry I don't really know what I expect of anyone on here (obvs can't decide this one for me), think I need to just need talk as much as anything. Thank you for reading.

Mummyme87 Wed 31-Aug-16 07:39:40

I couldn't read and run. What a heartbreaking and difficult decision for you to make. I care for women that make these decisions frequently at work and I can't begin to imagine how you go about making a decision.

Whatever you decide, it's the right decision for you 💐

footballwidow12 Wed 31-Aug-16 08:05:31

Hi OP,

I'm so so sorry to hear about your baby. What an awful decision you have ahead of you - every expectant mummy's nightmare.

Just know that whatever you decide is the right decision for you and your little one.

Sending you lots of love and a big cyber hug flowers

raviolidreaming Wed 31-Aug-16 09:31:14

Couldn't read and run, and wish I could help. Heartbreaking. flowers

elliej83 Wed 31-Aug-16 09:33:16

Again couldn't read and run. Thinking of you such a tough decision to make. Sending you all my love xxx

Jellybean91 Wed 31-Aug-16 15:55:23

First off, I'm so sorry this is happening to you.
One of my close friends discovered her baby had an inoperable heart condition and Down syndrome at 24weeks pregnant. Her baby wouldn't survive long after birth, so she decided to terminate.
I'm not going to lie and say that her life has been amazing since she made that decision, it was the hardest thing she's ever done, however she is now trying to become pregnant again and is looking to the future.
At the end of the day, whatever your decision, it's the best one for you.
It also helped my friend that she was able to hold her baby and she got photos and hand & foot prints. It really helped with the healing process.

Best of luck, my thoughts are with you xxx

MeDownSouth Wed 31-Aug-16 22:29:56

So sorry to hear this, noting I can say but thinking of you flowers

Sweetheartyparty76 Wed 31-Aug-16 23:31:46

I'm so sorry to hear about your baby, it's so heartbreaking to make a decision like this. We interrupted our pregnancy in May 2014 when we learned that our baby had a skeletal dysplasia which was incompatible with life. We had tried for him for 4 years and now we had to decide whether to let him go. I couldn't bear the thought of all the suffering he would go through in his short life and we don't regret our decision.
There is a lovely charity called ARC who helped me enormously. They have a helpline and also a forum to chat to other mothers who are going through the same thing.
I'm so sorry that you have to make such a horrible decision but whatever you decide, you baby is loved and cherished and always will be x

DanniAngelMummy Thu 01-Sep-16 09:43:22

Sorry to hear you have to make this decision flowersflowersflowers

Ffswtf Thu 01-Sep-16 09:53:00

So sorry you're going through this heartbreaking time flowers Wholeheartedly agree with pp, whatever you decide is right for you. Thinking of you, love and hugs xx

TikTakTok Thu 01-Sep-16 10:14:48

I'm sorry you are going through this and hope that you are getting plenty of RL support too.

Have you been offered help by the hospital? Is there a counsellor there or someone similar who is trained and experienced in dealing with this.

I think whilst everyone on MN is going to be hugely sympathetic it's going to be hard for 'us' to give advice.

flowersflowers

bessie84 Thu 01-Sep-16 11:13:06

just wanted to send hugs xxxxxxxxxxxxx

sj257 Thu 01-Sep-16 11:35:26

I'm so sorry that you are having to make this decision 😔 xxx

newbieho Mon 05-Sep-16 02:02:51

Can't offer an advice but sending you a lots of hugs xxx

scoobyloobyloo Mon 05-Sep-16 02:19:26

We had similar with one of our twins, however we knew he would never live due to the severity of his difficulties. In some ways this made the decision easier.

I sometimes wonder what I would have done had I had a choice. I work with people with severe learning difficulties and physical disabilities and would not want that life for my child, it's siblings or our family as a whole.

It's a horrendous decision to have to make, particularly when the outcome is not cut and dried.

Talk to those whose opinions you trust, contact ARC and be kind to yourself. Sometimes the kindest decision for your baby is the one that sets them free from pain.

iwillbemrsminty Mon 05-Sep-16 10:14:32

Good advice from Scooby and Sweet. So sorry to hear you are going through or have been through this. We are also currently going through something similar with one of our twins, although we don't know for certain what the exact problem is yet (declined amnio due to risk to both twins, I'm 17+3). Fetal medicine specialist is very concerned and we are waiting for a fetal echocardiogram and the 20 week scan (which the FMU are doing ) to try and identify what the problem is. We've been talked through the selective termination route as an option and just wanted to say that I know what you are going through and also to recommend ARC. Hugs for you OP. It is a very tough road ahead but you will get through it.xx

scoobyloobyloo Tue 06-Sep-16 09:35:49

Ranger - how are you doing today?
Mrs minty - so sorry you are going through similar - if you would like to, please feel free to pm me if you would like to know more about the decisions we made and how we came about making them.

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