Dilated ventricles in Brain and Cerebellum Measuring Small at 17 Week Scan

[Sarahpg]

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[happysaurus]

Congratulations on your little girl - you are already a wonderful parent. I am sorry things are so hard - the unknowing must be so painful. I've no experience I'm afraid but I hope that the next two weeks go quickly for you.

 

[DaisyMai]

Hi hun,

I am so sorry that you are having to go through this,I know unfair things can seem.
Although I've no experience of your situation I can sympathise as our son was born with a gentic metabolic disorder.We are 4 month pregnant with our second and this baby also has 1\4 chance of also having it.We are consultant led and will have a stay in hospital when baby is born.

I sometimes get down as its not fair that I can't just fully enjoy the pregnancy without worrying about the future.

But as a mum you love them no matter what,and he is worth every bit of worry!

Sorry I'm not much help but just wanted to help you feel no quite so alone...

Xx

 

[Sarahpg]

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[DaisyMai]

Ahh thankyou.I always wanted more than one child and for our son to have a brother or sister so it hasn't stopped us having another.


When are you due? I'm so glad to be having a winter baby after all this hot weather!

Xx

 

[Sarahpg]

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[steph.]

Oh no Sarah! I'm so sorry to see you back in this section. It must feel like a nightmare. Hopefully this will just be another scare with a positive outcome. Will keep you and baby in my thoughts xxxx

 

[Sarahpg]

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[happysaurus]

No, it really isn't fair but your baby's loved and will know how much she's wanted. That's a good start for her. X

 

[thayet]

Hey Sarah.. I'm so sorry that you're having to deal with this new worry. I don't have any experience with the specific things they found on the u/s, but as for the amnio, I really didn't want one either. In the end I decided it would be worth it to know as much as we could ahead of time, and honestly, it was by far not as painful as I thought it might be. I've had bikini waxes that hurt more!

The safety stats for amniocentesis procedures are so amazing nowadays.. I'd recommend asking your local hospital what their statistics are and deciding based on that. In the end, it's a decision only you and your partner can make, and there is no right or wrong answer. Myself, I'm glad I did it, even though it did mean more waiting.

Whatever you decide, I'm thinking about you and hoping for the best possible results

 

[TMonster]

I feel for you. I have had a similar pregnancy with many bumps in the road. I had a subchorionic hematoma early on with tons of bleeding for weeks and was on bed rest then had high AFP levels and there was a spina bifida scare and after all that at my 20 week scan (2 weeks after the early anatomy scan where they looked at everything and told us everything was perfect and this was just a followup) they found a severe congenital heart defect and the most severe variant of it. Because of the condition and the variant there was a 1:3 chance that she could have a genetic disorder that would only give her a 2% chance of living past the age of 1 combined with the severity of the heart defect and if she did she would have mental ******ation and mental illness but no one can say to what degree.

Unfortunately there were no non invasive tests for this disorder so I had to have the amnio. I had a very comprehensive microarray done with my amnio so they can test for many more conditions, microdeletions etc.

The stats at my hospital and of the doctor performing the amnio were great. The doctor has done hundreds of them, never had a loss, never hit a baby with the needle and was incredibly skilled.

The procedure hurt me probably more than most because I think he hit a nerve. The baby was in a breech position, it was just after 20 weeks so a bit late and I have an anterior placenta so he had to work around a lot of obstacles. The procedure was over pretty quickly but at the time I felt like it took forever. They put me in a private room with my husband to lie down and relax for a half hour and gave me juice and cookies after and told me not to get up until I felt up to it.

I was put on bed rest for a couple of days, complete pelvic rest and no lifting for a week and I got the preliminary results in 2 days and the full microarray results over a period of 3 weeks. Every time they got new results in they called to tell me everything was fine but it came in bits and pieces.

At the end of the day as far as anyone can tell she "only" has the heart condition to deal with and we've got a long NICU stay at the hospital when I give birth as well as several more open heart surgeries throughout her life but we are doing the best we can for her and know that our little girl is gonna be a fighter.

Good luck hun! I hope it works out for the best! Hugs!!!!!

 

[Sarahpg]

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[TMonster]

As far as the AFP test goes, it is notorious for giving false positives. If you are going to have an amnio they will test the amniotic fluid for AFP levels and that is the test that matters not the AFP level in your blood. I would opt out of the AFP blood test and ask them to just do the AFP on amniotic fluid. My blood AFP was high but my amniotic AFP was fine.

I would ask for the most comprehensive microarray they offer with the amnio. They can tell a lot more with a microarray.

Good luck! Hugs!

I don't know where you live but one thing you may want to consider is looking into major children's hospitals where they may see these things more routinely and may have more options available to you.

For example, my hospital has offered me fetal MRIs as well as all the echos I've had to look at her brain.

If you want to chat/vent you can always PM me.

 

[Jacobnmatty]

Hi Sarah, I could not read your post and not respond..

I am currently 34wks pregnant with our 3rd baby, another boy!

At 20 week scan we found that his left and right ventricles were dialated to 12mm.. We waited 2 weeks to see if a change, they stayed at 12mm. Dr then said wait 4 weeks to see if a change..they had dilated to 14mm..
We just had our 34 wk growth scan and the ventricles are dilated to 16mm now.

I am very worried, but have no idea what to expect. We had an MRI at 29 weeks which showed normal brain development otherwise. No blockage could be seen.

I was offered the amnio aswell at the first scan 20 wks but refused to due the risk of mc. I did have a blood test which looked for any infection like toxomoplasmas and that came back negative.

I don't know if I have been of any help, if you want to PM me feel free.

 

[Sarahpg]

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[TMonster]

Just wanted to send you lots of hugs. I am so sorry you are going through this and wish you and your family the best. I remember being exactly where you are at 20 weeks and I couldn't stop crying. I really wish I could hug you right now because this is such a horrible thing to go through. I really hope everything works out for the best.

 

[steph.]

Oh no I so sorry. I have no words.

Whatever you decide, there will be no judgement from me. I know your decision will be made out of love for you little girl. Big hugs xxxxx

 

[happysaurus]

I am so sorry and so sad for you and your daughter. No judgement here - as said above, we know how much you love her. X

 

[Sarahpg]

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[happysaurus]

Congratulations on little Madison Avery (a beautiful name) - I'm sorry that she was just too poorly. I hope the time passes gently for you and that you get comfort from your memories of her and the little memory box. *hugs*.