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Original poster

20 weeks scan not good news

27 replies

ErinH · 19/11/2010 10:12

Wondered if anyone has been in a similar position and if you could shine some light on the findings in a non-medical way.

20 week scan flagged up a collection of defects:
A Choroid plexus cyst
Congenital heart defect (VSD and ASD)
Excess fluid around the baby
Enlarged gall bladder
Small for dates

Now I know it doesn't look good. I'm absolutely devastated and am cherishing every kick and moment i have with my little boy. I've an appt at hospital on Monday to do further scan tests and amnio (as suspected underlying chromosomal abnormalities).

I've prepared myself for bad news but still hoping that things may surprise me.

Anyone, anyone who can offer me information, good or bad from personal experience would be so very very welcome.
Thank you.

OP posts:
aDarkStarWithStrangeWays · 19/11/2010 10:14

I have no information but wanted to send you my very best wishes. Hopefully someone knowledgeable will be along soon. Holding a good thought for you and your little one :)

squeezytoy · 19/11/2010 10:52

What Darkstar said. I wish I could help more but all I can do is send very best wishes for you and your baby.

I won't tell you not to worry (I'm waiting on results and am in a dreadful state of nerves) but do try to look after yourself over the weekend (I'm thinking chocolate, films, anything to make the wait pass). And remember there are also people on here who will have been through something similar.

I also visit www.babyandbump.com/ which is quite a big, active site and has loads of preg forums.

Good luck on Monday. Take care and do hang onto that hope.

Original poster
ErinH · 23/11/2010 11:05

No pleasant surprises, unfortunately, and we have a pretty gloomy outlook. Amnio results are due on Friday. They've suggested we prepare ourselves as they have given us a 1:2 chance of it being Edward's.
:(

OP posts:
going · 23/11/2010 11:09

I'm really sorry to hear this Sad

Scootergrrrl · 23/11/2010 11:09

How awful for you. Will be thinking of you and your baby x

twirlymum · 23/11/2010 11:27

We had some of these symptoms, the bi-lateral choroid cysts in DD's brain were really big.

We had a repeat scan two weeks later, and they had shrunk substantially. Another two weeks later, and they had disappeared. We were told they had 'self-resolved'.

There is always hope.

Thinking of you.

aDarkStarWithStrangeWays · 24/11/2010 10:09

I am so sorry to hear that Erin :( I will still have everything crossed for a better outcome for you and your baby x

Original poster
ErinH · 26/11/2010 18:36

Sadly, results came back today and confirmed that it is Edward's syndrome. Thanks for all your well wishes, they mean a lot.

OP posts:
OnlyWantsOne · 26/11/2010 18:39

oh Erin :(

HumphreyCobbler · 26/11/2010 18:45

I am so sorry to hear this Sad

I have been through a very similar experience, I am happy to talk if you feel it might help.

linziluv · 26/11/2010 18:46

I've got nothing constructive to say except I'm so sorry...didnt know what edward's syndrome was so just googled it...what a terrible thing you are going through x

DrSeuss · 26/11/2010 19:07

So sorry to hear about this. Thinking about you.

Sparklies · 26/11/2010 23:55

I am so sorry you got this news :( Very much thinking of you.

SparklyJules · 27/11/2010 00:05

Oh Erin... how dreadfully sad, don't know what to say Sad

grandj · 27/11/2010 11:11

Hello Erin
It is such sad, sad news, and I am so sorry that you had to hear this. My son was also diagnosed with Edwards two weeks ago, and we lost him on Monday this week.

Have you had support from the hospital to help you decide what to do next? Please let me know if you have any questions that haven't been answered yet. It is very early days for us too, but I have had a previous baby diagnosed with Turners, so I feel, devastatingly, as though I know lots about all this. Please let me know if there is anything at all I can answer for you.

squeezytoy · 27/11/2010 14:55

Big hugs.

TheUnmentioned · 27/11/2010 14:57

thinking of you x

Original poster
ErinH · 03/12/2010 09:20

All you lovely people, thank you for your messages. I now need a little help and advice.
We lost our little boy last Sunday. We got to hold him, and although he had died he still looked very peaceful. It was and still is the hardest thing we did. I'm still crying.
We wanted to treat this as a sad miscarriage (I had one 2 years ago at 9 weeks) and make sure our decisions were firstly the best thing for the baby and secondly would have the least impact on our 2 other little boys (i'm very lucky to have them). We were thinking of letting the hospital dispose of the body and come home and get on with life. We didn't want to plant a tree or something similar, just didn't want a constant reminder.
SO MUCH FOR THAT!!! Well having seen, held, kissed and told our son how much we wanted him and loved him, I now can't bring myself to just leave him and not have some service to show our love and respect. He was my son. I gave birth to him and loved him. But I wasn't prepared for this. We just don't know what to do. I don't think we want a full funeral service or burial, but I'm not sure. Please help me make the right decision for our future but also our son who I so desperately want back. :(

OP posts:
louzie · 03/12/2010 20:31

Erin, I'm so sorry to hear your news.

My baby Fern was stillborn last Friday at 24 weeks. We are having a funeral for her next Tuesday, but a very small affair - only the most close of family and friends. Like you said, I feel that I gave birth to her and loved her and it's important to me to mark her life. We're having a cremation as it's important to us to be able to bring her home afterwards.

I also have other children - 3 daughters, and I understand that while this will be a life-changing experience for me, it doesn't have to be for my daughters - we are really trying to limit the effects of this on them where possible.

The decisions you make for you and your family will be the right ones. It doesn't matter what other people would do at this time, and it doesn't matter what you had planned to do - it's impossible to know the best way to handle a situation like this until you're actually faced with the decisions. From the reading I've done over the past weeks and the advice I've been given by the fab mummies online here, there is no right or wrong way to deal with your feelings right now - everyone is different.

I'm thinking of you over the coming days as you make your decisions.

Sparklies · 04/12/2010 00:17

I can't even begin to imagine what you are going through. Again, I am so sorry. I think I would feel the same as you. He is your little boy and always will be.

I can recommend the Miscarriage Association as a place to turn to for some wonderfully supportive, understanding and above all, kind listening. They may be able to help you make up your mind on what you want to do. You can contact them via phone or email, either is fine.

Sending strength to you and your family.

squeezytoy · 04/12/2010 05:06

Erin, I am so sorry for your loss.

I have not contacted these people directly but have used their website while trying to make my own decisions recently: www.arc-uk.org/
I've heard them recommended by mums on this forum.

You are in our thoughts.

grandj · 04/12/2010 14:26

Hi Erin
Our hospital gave us two choices - either that our son could be cremated at a service arranged by the hospital, or that we could arrange our own funeral. I know from other people that many funeral directors are well set up for babies' funerals, some will do it for free, for example. Alternatively, the hospital service means that you can attend the cremation with other parents who have lost their babies, and we were given the option of taking our baby's ashes so that we could have our own ceremony to say goodbye to him. I found this easier to deal with, but I know that many people, like Louzie, have found they wanted their own funeral. I don't think there's a right answer and it's unbearable that it's something we even have to think about. I hope you have lots of support to make such a hard decision xxx

PonceyMcPonce · 04/12/2010 14:39

This reply has been deleted

Message withdrawn at poster's request.

louzie · 06/12/2010 23:09

Hi Erin,

You haven't posted for a few days - how are you?

I know you're going through such a difficult time and hope you're managing to find some peace.

Original poster
ErinH · 10/12/2010 18:30

Hi. We're fine. heading in the right direction. We've decided to attend a hospital organised cremation on Monday in order to get some ashes. We'll plant a tree in the spring, when he was due and scatter his ashes then.
We really struggled with this decision as we really didn't want to go so far down this road, but in order to get some ashes to do something nice on his due date, we felt we had to attend the commital service for him.
Monday's going to be hard, I think, but hoping that the healing will begin fairly soon after. Feeling strong most of the time, only a few tears each day, so def getting better.
Thanks for thinking of us. x

OP posts: