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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

Issue with brain on scan

14 replies

eastview · 10/03/2022 19:09

Hi everyone. Had a repeat 20 week anatomy scan today at 12+3 and they have referred me to a specialist and my notes say cerebellum appears low and slightly oblique in position. I am so worried that something is really wrong with my baby and they aren't telling me anything. Has anyone had anything like this on their scans please? Thanks in advance

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Original poster

eastview · 10/03/2022 19:15

21+3 **

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Helpdesk3 · 10/03/2022 22:33

Bumping for visibility

Nikki037297 · 11/03/2022 07:17

I have not but I have had a baby with sever heart defects and when it was picked up on the 20 week scan they pretty much lied to me and said we think we can see a hole in the heart. I went ohhh ok!? Will that be ok?? (My friend had one when we were little she was fine) so I assumed my baby would be. They kept scanning for like an hour and got more people in and they told me I’d need to see a specialist, but from what they can see the heart has developed a bit different but besides this baby is fine.

I then left, looked in my notes and googled the words she wrote. DORV, coarctation of the aorta, no great crossover, large ventricular septial defect. Large pulmonary valve and vessel. These words meant nothing to me but Google told me a lot! A baby with these defects can not survive without huge medical intervention very soon after birth. I had to wait 5 long days for this specialist scan where they told me multiple times that day to end my pregnancy. There was a 1in5 chance my baby had a major chromosome abnormality and a lot of these were not compatible with life.
My head was a mess and I didn’t want to believe them. I opted for an amnio and they done it immediately. First results came back the next day then the rest took 10 days. He didn’t have a chromosome abnormality, but still he had 7 defects in his little heart and I was still told to end this pregnancy I was 23 weeks at this point. It was the darkest time of my life.
I’m not saying your baby will have a similar outcome as these conditions are not at all the same. But find out as much as you can about what ever it is your baby has and don’t rush into any decisions.

Original poster

eastview · 11/03/2022 07:50

@Nikki037297 I am so sorry to read this. It must be so heartbreaking for you and I feel like they aren't giving me any information either. I'm so sorry that they were pushing you to end the pregnancy. That is not a decision any parent should have to make. Sonogropher told me that it may just be babies position but notes say differently and Google is terrifying. My scan is at 12 today and I am so terrified and not slept at all. This baby is very much wanted. I've had 2 losses so this will be our first and only baby so the thought of losing her or her having life long disabilities will break me and I don't know how I'll cope. X

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Nikki037297 · 11/03/2022 08:34

I’m so sorry your going through this. I hope today everything goes as well as it possibly can. There is room for error and it may be the sonographer has made a mistake and all is ok. If not at least you will find out today they will tell you at this scan today. I went against their advice and did not end my pregnancy. My child has life long limiting disabilities but he is loved so much and life wouldn’t be the same without him. He’s had 3 huge open heart surgeries but suffered some damage to his brain during his second surgery which unfortunately is not uncommon in open heart surgery and I did have to sign the consent forms before surgery saying I knew there was a risk of death if catastrophic injury or stroke. When it happened and he woke up and we knew immediately something is badly wrong here they pretty much said you did know these are the risks. He will never be able to live alone or drive a car, never be able to go out alone. And for now that seams ok he’s very young still but I’m unsure how it will be when he gets older and he’s in a specialist chair to go out. I pray things get better and he does things they said are not possible but I just don’t know. But never once have I regretted keeping him. He was loved the moment I found out I was pregnant and he’s loved now.
It was a very tough choice to make at the time as I was going against medical advice and he’s under a lot of different departments at the hospital for regular appointments, life is different to what I expected

Helpdesk3 · 11/03/2022 11:19

What was centile was the baby's head circumference? If that's in normal range, that is a positive sign that brain anatomy is growing

Helpdesk3 · 11/03/2022 17:21

How was your scan?

Original poster

eastview · 15/03/2022 09:20

I had my scan and they could not find corpus callosum and cerebellum still appears low. I have to have an MRI scan this week, I am terrified. Everything else seems perfect including head size and shape and spine. I'm praying that this is wrong or nothing severe. They didn't mention possibilities/ prognosis

OP posts:

Nikki037297 · 15/03/2022 09:26

I hope you get to the bottom of this very soon as the waiting and waiting is awful I couldn’t sleep when it was me and I was on the internet constantly at all hours of the day and night trying to find some hope. Do you know when your mri will be?

Original poster

eastview · 15/03/2022 09:42

@Nikki037297 I just called to chase them up and they've given me an appointment with fetal medicine tomorrow morning at 11 and then fetal medicine will decide if they are going to send me for an MRI (that is not what I was told on Friday) but I guess it's 1 step closer. I am so scared

OP posts:

Karatema · 15/03/2022 09:44

I am so sorry you are having to go through all this.
30 odd years ago I went through similar. It is terrifying but, probably, easier for me because we didn't have Google!
I hope everything turns out well for you.

Original poster

eastview · 15/03/2022 09:52

@Karatema do you mind me asking the outcome for you? I have been trying not to research but it's hard to stay away. Google brings up anything from mild learning difficulties to death so I'm not doing it again as it's definitely not helpful.

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SirVixofVixHall · 15/03/2022 10:04

I don’t have any experience of this specific issue op.
I did need to see a specialist for scans as there was concern that my dds head was small relative to her body, and that she could have a genetic condition that causes organs to be enlarged. I remember how worried I was and I feel for you. ( In my case all was well).
I hope you get a clearer view tomorrow and that all is ok.

GrannyBloomers · 15/03/2022 10:59

I had a scan indicating a heart defect, two vessel cord and something else wrong. The first was proved incorrect by fetal medicine in GOSH and then second two were found at 25 weeks to be incorrect.
I am always a little suspicious of scan findings and would always want a second opinion to confirm.
Good luck

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