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Old Jun 19th, 2017, 15:44 PM   1
MandT
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Cerebellum issues


Hi all,
My pregnancy started normally. However during the 2nd trimester ultrasound the lady said that our baby's cerebellum measured small compared to the norms of a 20 weeks scan. However everything else was fine and growing normal. We were then referred to a bigger hospital in the city the following week which showed that it was still small but bigger than what was measured a few days back. She sent us to the genetics department who explained all the possible pathologies and even termination. 😊 We were heartbroken as you can imagine. Having already done the trisomy 21 test she said that the chances of a gene malfunction was less but there was still 1-2% chance. She suggested an amniocentesis but said that it wasn't really obligatory in our case and to pass a MRI scan instead to see if there was any malfunction.
Two weeks later we passed another ultrasound showing that the cerebellum was now on the limit of the norm and had grown to the 6eme percentile (like 1mm smaller than the norm) and that there was no other anomalies. She even said that termination wasn't on the cards as there was no other growth problems. Besides the cerebellum was growing and now in the limit, and also it could be that the due date was wrongly calculated which could give rise to different norms. She advised that we pass the MRI svan after 28 week of pregnancy as the baby's head is better formed and also will move less so that the results are more precise.
Fast forward we do the MRI scan as advised and the doctor told us that yes the cerebellum was still a still smaller than the norms but that everything else was fine. He had done a segment by segment view of the head and everything else was ok. He said that he will show the results to another doc and keep us updated. 10 days later (phew!) we get a call from the secretary saying that unfortunately the baby moved too much during the MRI scan and that they couldn't get any clear images to be interpreted, but that the vermis was seen and there was no problem with it. There was no other problems noticed but they preferred to do another MRI scan along with the ultrasound at 32 weeks to be sure if there wasn't any other problems.
So we do the ultrasound first and everything is ok. The woman told us that the cerebellum is a tiny bit small (like1mm smaller than the norm) but in the 10eme percentile and growing and that there was nothing else to worry about. The vermis was fine and the growth rate of the baby in the norms.
We passed a MRI scan just an hour after the same day. It was long and painful as the baby moved a lot so they took a lot of time to get clear images. They doc said the same about the cerebellum but said she is yet to interpret the images and will get back to us. A week later we get a call saying they have referred the images to another specialist and awaiting his results. For them the cerebellum was a bit small but no other ref flag.
A week after the same doc calls us saying that the specialist said that the cerebellum hemispheres were fusionned /fused. But that she doesn't know any more than that. She said that she didn't see termination as the end result but that we need to wait to meet the specialist in person to discuss the case and see if the situation was really bad anencephaly warranted a termination. So it's been a week since ans still no call from the specialist for a rendezvous. I called twice and left messages with his secretary but no response yet.
I'm desperate! I'm read and re read a million things on the internet about pathologies arising out of fused cerebellum.
What Im surprised about is that the ultrasound which we did on the same day went well and the doctor didn't notice anything. Also the doctor who took the MRI images didn't see this problem.
From the 20 th weeks scan it's always been this or that ... no one is able to give us any response. Every doc we have met say that this is the first time they have encountered something like this and that it is rare. We are aware that a smaller cerebellum by a 1mm or 2mm happens and that every foetus / child is different and takes its time to grow, and not to worry about too much.
I have been worried sick since the 2nd trimester scan but regained hope knowing that everything else was fine. But this now about the cerebellum hemispheres has left us devastated.
SOmtimes I wonder if this is deliberately done ... meaning the doctors making us run around and keeping is in the dark. Also maybe it's just protocol, and I fell into the list. Whatever is it, it's horrible!
We called the MRI doctor but she doesn't want to talk to us ... meaning prefers her secretary to reply. Everyone has washed their hands off.
Im now at 34 and a half weeks. I lost my mucus plug two weeks ago ... after a vaginal examination of the foetus head as the baby's head is really low in the pelvis. I am trying to rest and take it slow. But since we had this news last week I'm crying all the time and looking for answers on the internet.

Have any of you been through something like this? I would like to chat or exchange views on this, if you have the time.

My family is supportive and everyone told us that termination is the solution but my husband feels that all will go well with the pregnancy and we will have our baby. It's our first! I am not a very positive person generally speaking but deep down feel the same too. I've been having nightmares about termination and think about all this day and night. My baby is moving like normal and growing I believe.

I'm exhausted 😩 but don't wanna speak to family and friends about this as I'm not looking for what they keep telling me or how they try to comfort me. It doesn't comfort me. I guess speaking to someone I don't know will help me more at this point.

Thank you for reading and responding if you can.



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Old Jun 19th, 2017, 15:55 PM   2
krissie328
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I'm so sorry you are going through this with no clear support from your medical team.

I don't really have any advise but I know how stressful these things can be. We had other issues with ds and it left me a wreck.

I hope you get some answers soon.



 
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Old Jun 19th, 2017, 16:21 PM   3
misspriss
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I don't have any experience, but I'm so sorry to hear they haven't been able to tell you anything definitive yet. I don't feel like it is deliberately done, to give you the run around. I think that doctors are very careful to give bad news, especially when everything is so close to normal and just outside of normal, they do not want to say anything definitive because what if they are off by a little bit on the measurements? They just want to be careful, not to give you the run around.

I hope everything works out okay



 
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Old Jun 19th, 2017, 22:45 PM   4
WackyMumof2
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Thinking of you. Reading something like this within a forum setting with other parents is heart breaking. I'm sorry I can't give you any of the answers you need but every moment with your little one inside your belly or in your arms is precious - no matter how long you might get. I know this probably doesn't give you any peace but focus on the big day and remember you will meet your little bundle soon. Love is limitless.



 
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Old Jun 21st, 2017, 10:16 AM   5
Twag
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I am so very sorry you are having to go through all of this sending you all the love & best wishes that everything works out for you

I do not have any experience of what you are going through sorry but our friends were told at their 20 week scan that their son had a heart defect and would not survive and to terminate - they didn't and he had heart surgery at 3 days old and he is now a very healthy 5 year old

Do what you heart tells you keep the faith - I think sometimes Dr's are all too quick to suggest termination




 
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