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Choroid Plexus Cysts and Clenched hands

(24 Posts)
Georgia1512 Tue 26-Mar-19 17:58:00

Just looking for a bit of hope really, I’m 15+3 weeks pregnant and went for an amniocentesis yesterday, whilst being scanned the consultant pointed out that the baby has cysts on its brain and also clenched fists - both of these are common indicators for trisomy 18 - Edwards syndrome. I know it’s probably a far reach but I need hope and just want to know if anybody has had the same thing and the baby not have Edwards syndrome. I’m trying to convince myself all will be okk as I am only 22 and never experienced anything like this before please if anybody has had the same thing I’d appreciate hearing about it.

Jennylou88 Tue 26-Mar-19 21:42:57

Sending you hugs xx have you spoken with your midwife? Did you get tested for Edwards or Pataus - this is normally a blood sample afer the 12wk scan? Xx

Georgia1512 Wed 27-Mar-19 06:50:05

@jennylou88 Thankyou so much, yeah I’ve spoken to my midwife and I am high risk for Edwards and pataus syndrome. I’ve had the amnio and I’m expecting the results back today I just really don’t want it to be that my baby has Edwards syndrome I’m just terrified

Bees1 Thu 28-Mar-19 14:20:32

We were told at 20week scan that our baby had cysts in its ventricles (brain) and fluid around it’s heart (should add earlier quad test had put baby at low risk for trisomies 21, 13 and 18) and we’re sent off to a tertiary centre for further tests. We were very very lucky and everything turned out to be fine, apparently both were normal variants, that baby is now 2 and charging around outside as I type. Wishing you lots of luck for the best outcome.

TheDisillusionedAnarchist Thu 28-Mar-19 22:06:53

My daughter had T18. The clenched fists are sadly almost diagnostic, a junior doctor spotted Rumer’s on a research scan and later admitted she knew Rumer had T18 then.

I’m sorry you are going through this too. I was 34 which is the average maternal age for T18 but I know someone who was 20, her daughter is now 2 and has done very well.

Georgia1512 Fri 29-Mar-19 09:39:53

Got my results back yesterday and unfortunately my baby does have Edwards syndrome. There are no words for what I’m feeling and this isn’t even the hardest part yet, just wanted to say a thankyou to you all for your support and kindness and for making me feel less alone

DontCareBear Tue 16-Jul-19 00:07:42

Hi @Georgia1512 - how are you doing? I am in a very similar position as you were in in March only I am 31 and now 19 weeks pregnant with my first baby (conceived via IVF). I just had my amnio this morning but am pretty sure my baby will have it as she also has clenched fists and rockerbottom feet plus cysts in her brain. We got a high risk result from a Harmony test we did too.

I have decided not to terminate though and wondered what you did and how you are feeling today? No judgment either way - it is so unfair and terrible that we have to be in this position sad

Georgia1512 Tue 16-Jul-19 11:53:17

@dontcarebear sorry to hear of your situation, my baby was diagnosed with Edwards syndrome unfortunately after the amnio, however we decided not to terminate. I am now 31 weeks pregnant and found out I’m having a little boy, he has rocker bottom feet and cysts too but is continuing to grow and fight every day. I am happy we decided to continue with the pregnancy as my little boy makes me so proud when I feel him kick and wriggle etc, I know the hardest part is yet to come but I just wanted to give him a chance, personally it has been the right decision for me, if you’d like to talk then message me I will help you in any way I can xx

DontCareBear Tue 16-Jul-19 14:01:34

@Georgia1512 that is such amazing news and is exactly how I feel about our little girl smile I love feeling her kick and I feel like she is so full of life already. Even during the amnio she was trying to knock away the needle with her little bunched up fists - it was so cute (but also nerve racking as I didnt want her to get pricked!). I really hope I get to meet her although I have no idea what to expect if she survives this. I just hope she wont have a life of pain for however long she will be with us. I love hearing that your son is thriving - he sounds like a little fighter xxx

Georgia1512 Tue 16-Jul-19 14:09:59

@dontcarebear it is lovely isn’t it and aww bless that’s the thing, regardless of the diagnosis they are our babies, I feel the same I just want to meet my son, the hospital have said they may be able to get him out earlier so I get time with him - if he starts to decline but so far he’s been stable and growing just fine- fingers crossed our little ones continue to fight and we get some time with them xxx

DontCareBear Tue 16-Jul-19 19:04:16

@Georgia1512 yes fingers crossed! Would be so great for you to meet your little boy smile I will pop back every now and then and send you little updates. I hope I get to meet my little daughter too. Take care and have a good rest of the evening xxx

DontCareBear Wed 17-Jul-19 17:54:42

Hi @Georgia1512 - just wanted to send a quick update that the results came back as postive for T18 today. It was expected so not too shocked. I have accepted now and am ok and ready for the journey ahead. I hope you are still doing well x

Georgia1512 Wed 17-Jul-19 19:25:48

@dontcarebear, oh I am sorry to hear, it’s hard isn’t it, i was in the same position I wasn’t really shocked it was just hard to have it confirmed, I hope your pregnancy goes as smooth as possible, here if you want to chat xx

Evidencebased Wed 17-Jul-19 19:50:05

@dontcarebear
@Georgia1512

Love and best wishes to you both. So hard what you're going through.

I hope you've been given info about
Soft UK, but here's their details in case not: [[ www.soft.org.uk]]/

DontCareBear Wed 17-Jul-19 22:14:01

Thanks @Evidencebased - yes I am aware of SOFT and have been reading the stories from other families that decided to continue their pregnancies after diagnosis. It helps to know I am not alone.

Thanks @Georgia1512 I will definitely pop in for a chat every now and then x

Georgia1512 Thu 10-Oct-19 14:38:38

@dontcarebear hey hope you’re well, I just thought I’d check in and see how you’re doing xx

DontCareBear Thu 10-Oct-19 23:10:34

Hi @Georgia1512 thanks for checking in. How are you doing? Did everything go as well as could be with your little boy? I am 32 weeks today and my baby girl is doing well so far - just like you mentioned about your son, she is still fighting. I totally get what you were saying in your earlier posts to me about just enjoying the good times while they are here - revelling in her kicks and wriggles. I am hoping she can hang on in there for the next 8 weeks so we may get a chance to say hello xxx

Georgia1512 Fri 11-Oct-19 09:06:26

@DontCareBear aww that’s lovely I’m so happy she’s doing well, She sounds like such a little fighter bless her. I had my son by c section in August, he was absolutely perfect and was just so relaxed and content, we had 5 perfect days with him and then he passed away it’s been really hard I’m not going to lie but to even meet him and get to hold him was a blessing xx

DontCareBear Fri 11-Oct-19 18:40:02

Oh @Georgia1512 I'm sorry to hear that but also so glad you got the chance to meet him and give him lots of love and cuddles. How are you feeling now? I am sure it is still all quite raw but I hope you are taking care of yourself and able to remember those good memories you have holding and loving him. Do you mind me asking what his name is and was it a peaceful passing? It is all we can hope for when it comes to these special little babies. So long as they only feel love and we are with them right until the end x

Georgia1512 Fri 11-Oct-19 19:04:37

@dontcarebear Thankyou, and it’s still quite hard to process I have good and bad moments and yeah I am so grateful I got to hold him and see his little eyes and just make memories with him, his name is Brandon Junior, after his dad, and it really was a peaceful passing, he was in no pain at all, he was in my arms and his breathing slowed he didn’t cry and wasn’t in discomfort he was just so peaceful xx

DontCareBear Fri 11-Oct-19 20:30:36

Aww that's a lovely name and I am so glad it happened so peacefully. I'm not religious but I do believe these babies are blessed in a way that they never have to know pain or disappointment. They only receive that unconditional love from their parents before they become little angels. I hope we both can have more children after this and the memory of our little ones that have left us will always be with us. I will make sure any future children I have know about their big sister that was here before them. I am going to get a cast of her little fist and foot. Did you manage to get anything like a footprint or handprint to keep with you? Im thinking of also getting her footprints and having them stamped on a necklace. I just want to remember her forever when she does decide to go (although I am sure even without anything physical to remind us, we will never forget them sad). I hope you have a good support network around you to get through this tough time. You are obviously an absolutely amazing woman and mother - I hope to be able to be the same way when the time comes x

Georgia1512 Sun 13-Oct-19 18:40:26

@DontCareBear Thankyou and yes I believe the exact same, I think that’s why these babies are only given to parents that can love them and make sure they feel loved. They will always be with us, junior has made his mark on me forever, just as I’m sure your little lady will regardless of the amount of time you spend with her, you created her, grew her and have been keeping her safe inside you for months, and definitely my future babies will know all about their brother, just as my daughter now does. I’ve had his hand and feet casted I’m just waiting to get them back and we’ve been looking at jewellery too with his footprint on, they are incredible such a nice little thought. I hope you are surrounded too with people who love and support you Thankyou so much that means a lot, you too are very strong Xx

bloodywhitecat Sun 13-Oct-19 18:43:41

I am so sorry you had to say goodbye to Brandon Junior, wishing you peace and strength flowers

Georgia1512 Mon 14-Oct-19 18:55:51

@bloodywhitecat Thankyou I appreciate it xx

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