Fetal Anomaly, 14 Weeks

(23 Posts)
LilyJessie Tue 04-May-21 18:00:22

Hello,

First time here and first time pregnant, and have had some devastating news.

I am very lucky that I have a very loving and supportive boyfriend who I am so grateful for, but we both are in total turmoil about this.

We have spoken to our nearest and dearest, but sometimes, that detachment from people who don't know you is the advice that might help.

We had some horrible news at our scan last week about a fetal anomaly, but there is no way of knowing the impact on their life until birth.
We have been in touch with ARC and BPAS who have provided us advice on both sides of the fence.

We have been offered a surgical abortion.
We have also been offered counselling on fetal anomaly.

We have read about the amazing success stories of birth, but we never seem to get any straight answers for the long term impact.
I am absolutely petrified of short bowel syndrome, and not sure if anyone has any advice on that?

Has anyone dealt with either ending a pregnancy, and how did you cope with the guilt (if you had any, because of course it's okay if you didn't, and felt any other way because wanted babies but unwanted diagnosises you may have felt relief or a mix of emotions).

Or, how did anyone cope with any guilt for their life impacting fetal anomaly/ watching their baby fight/ how do you cope with the fetal anomaly?

I am in a mess, I love my baby a lot.
Am I terrible mother if I don't take the risk which may leave them with life long difficulty? Because we know they'll be in NICU for at least a month, and we have no way of knowing the impact it'll have on their life.
Or am I a terrible mother if I don't take any risk with their life, and choose to end the pregnancy to stop them having a life of pain.

Please be gentle with your responses (if I get any)... I am really upset.

Thank you.

OP’s posts: |
Birchtree1 Tue 04-May-21 18:16:29

Hi,
My heart goes out to you!
We had a baby with a lethal genetic abnormality. Found out at 12 week scan and subsequent consultant scans a while later. Would have been our first boy but we decided to let go of him as he would have passed in the womb or straight after birth.
It never leaves me and I think of him every day. But we were lucky and by now have had 2 healthy children and we feel very lucky.
Happy to answer any questions. Happy for you to message me privately if you prefer!
Ours was a very clear cut one as in not compatible with life but I have thought about everything a lot and impact on me, family and partner.
Sending all the love and here to listen! X

DifficultPifcultLemonDifficult Tue 04-May-21 18:34:52

Hi op.

So sorry that you are going through this.

My little girl was born with a condition. It wasn't diagnosed during my pregnancy, although I did feel something wasn't right.

She lived for 2 weeks, and I loved her every minute, and still love her now.

If I had known what she would have went through I would 100% have had a termination though. Not for my sake, but for hers. I know how awful that sounds, but, as a parent, it's our job to put our babies needs first, and, for her sake, it would have been better for her to not have suffered through the short life she did.

I don't know about the condition your child has, but this decision is so heartwrenching for you, and there may never be a 'right' answer.

Like me, you may have your child and regret the suffering they went through, or you may have a termination and think "what if" forever more. There are so many scenarios and there will always be an element of "I should have...." for the options you decided against.

You aren't a terrible mother at all, you are considering what is best for your baby, even if that means pain for you, and that makes you a pretty bloody fantastic mum flowers

All the best op flowers

Moominmiss Tue 04-May-21 18:37:04

@LilyJessie I’m so sorry you’ve received such bad news following your scan. I can’t begin to imagine how you’re feeling.

So has your baby been given the short bowel syndrome diagnosis?
Did they say how short the intestines are?

I’ve not had personal experience, but a lady I work with has a daughter who was diagnosed during pregnancy. They were told the shorter the intestines the bigger the problem. Her baby had just over half what a ‘normal, non affected’ baby would have.

I don’t know all the full details but I know her baby was born at 36 weeks and spent 3 weeks in nicu.

Whilst in nicu she was tube fed, and I believe didn’t start taking anything else until nearer 3 months when she was given a special formula along with medication to help the bouts of diarrhoea.

Her daughter is now 3 and I know they’re hoping that one day she may be able to have a bowel transplant which apparently are becoming more successful these days.

It’s great that you’ve already reached out to ARC and BPAS.

There is absolutely no right or wrong in how you feel regarding the decision you face. I think the guilt of either terminating or keeping the baby is natural, and is simply a reflection of how very much you care.

Hopefully somebody will come along with more information, as the information I have is second hand and limited.

Sending you so much love.

Bananarama3star Tue 04-May-21 18:44:45

I'm so sorry you've been given bad news. I've been there and know how devastating it is to be told there is something wrong with your baby.

Although I've no experience of short bowel syndrome, we were told at a very late scan that our dd had duodenal atresia. She would need life saving surgery immediately after birth and spend time in NICU. We were also given 'options' which I found shocking at such a late stage (34 weeks). We were also told this condition was highly linked to Downs Syndrome with a 1 in 3 chance.

The rest of the pregnancy was a blur, we really didn't know anything until she was born. They also discovered she had a twisted bowel when she was born so it all became very urgent. She recovered well though and was in hospital for less than they had told us to expect. She also tested clear of Downs Syndrome. She is doing really well now. We do look back at the last few weeks of pregnancy and the birth etc thinking how traumatic it all was. We will never forget that scan and quietly being led into a room with a box of tissues on the table between us and the dr. I really feel for you, it must be such a shock.

Have they put you in touch with any others who have been through similar/support groups at all?

Sorry I can't be much help, hopefully someone will come along with advice more specific to what you need flowers

LilyJessie Tue 04-May-21 18:53:57

@Birchtree1
Thank you so much for replying.
I am so very sorry to hear about your experience and the loss of your baby boy. My heart is warmed to know you have two healthy lovely children now. So many heartfelt congratulations for that.
It's been such a whirlwind of a week, that it's just the constant up and down of what to do. But sharing your story has really helped to read as I can identify with everything you say. Thank you.

OP’s posts: |
LilyJessie Tue 04-May-21 19:00:17

@DifficultPifcultLemonDifficult
Thank you so much for you reply and sharing with me your story.
I am so very sorry for your loss, that's so heart breaking. You are so brave for telling it to help others like me. It truly is so helpful to hear from real women and their experiences and it will help us get to the right decision for us, thank you. X

OP’s posts: |
LilyJessie Tue 04-May-21 19:11:37

@Moominmiss
Hello, thank you so much for taking the time to reply to me. It's really helpful.

Our baby has been diagnosed with Gastrochisis, which the consultant said was striking compared to other babies, and he believes it could result in short bowel syndrome which he will be more sure of as the pregnancy progresses. But ultimately, he won't know until it progresses and we have our little girl.

They were absolutely fantastic, provided us with all the information the could at that time, and also were really supportive of any decisions we made.
They explained what happens with simple Gastrochesis, but can't obviously comment on any other complications as such, as they won't know until later on/ maybe even birth.

I think what your friend is going through is what I'm most afraid of. The prospect of a full transplant.
I am truly keeping everything crossed for her little one that they get some good news and it all goes well, my heart goes out to her.

I feel so selfish, but I just never thought we would be here. I took for granted that I thought it would all go well, I suppose we all think 'ir wouldn't happen to us'... But I am so grateful for the amazing NHS and all their support. And the community of netmums!

Thank you again.

OP’s posts: |
LilyJessie Tue 04-May-21 19:18:39

@Bananarama3star
Hello,
Oh, you poor poor things. It is so wonderful to hear it all worked out okay for you, that just have been so traumatising and difficult. Thank you for sharing your story with me.
How is her bowel now? It is fantastic to hear you got the all clear re Down Syndrome, and she is doing so well.

We haven't been put into touch with other parents but I have reached out to different support groups to learn about their experiences to help our decision... It's so daunting. We are hoping to hear back soon.
It's hard because the less common something is, the less experience there is to draw off. I have hopefully found one group which seems promising.

Thank you again.

We just don't want to cause our little girl any extra pain which will cause a very difficult life for her.

OP’s posts: |
EmbarrassingMama Tue 04-May-21 19:28:04

Hi OP. So sorry to hear your devastating news. It's so traumatic to be told something like that during your pregnancy.

My closest childhood friend had Gastrochisis (she was born back in the 80's) and the operation was a complete success. She lives a totally "normal" life. To be completely honest with you I never realised it was such a serious condition because of the way she and her family spoke about it.

I hope you continue to receive reports on her health and condition and find a service that helps you and your partner make a decision that is right for you all.

Thinking of you.

ShootingStar94 Tue 04-May-21 19:31:45

I'm so sorry you are going through this.

I unfortunately ended a very wanted pregnancy earlier this year at 20 weeks due to a chromosomal abnormality, but there were a lot of unknowns. It was a very rare syndrome that could affect our baby in many different ways, but we wouldn't know until he was born, which he was unlikely to survive to, exactly how or how severely he would be affected. Even in the best case scenario though, he could never have lived a normal life and in addition to the issues he would have from birth he was high risk for childhood cancer.

I know it was the right decision for him, but I do still feel guilty that we never gave him a chance. But then I also know I would feel so much more guilt watching him suffer, knowing I could have prevented it.

We love him so much, and have so much love to give, and I feel awful that he was never in our arms, experiencing it, but then I look at it from another perspective - that all he knew was warmth and comfort and nourishment inside me, and he never had to endure pain and suffering.

Whatever decision you come to, it is the right one for your family. There is no easy option, and there are going to be what ifs regardless of what you decide, but you are trying to do what is best for your baby, and that makes you a wonderful mother.

Look after yourself thanks

Ethelfromnumber73 Tue 04-May-21 20:10:59

Hi OP,
So sorry about your baby's diagnosis. I don't know if you've seen this but this seems to be very sensible, accurate information on gastroschisis

https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/gastroschisis/

Take care thanks

Metallicalover Tue 04-May-21 20:28:32

Sorry your going through this.
I know of a girl who is now 7 who was diagnosed with gastroschisis she had a operation when she was 1st born and now she's a healthy girl.

The majority of people with this condition live a long and healthy life.

LilyJessie Tue 04-May-21 20:35:47

@EmbarrassingMama
Hello, thank you so much for your reply.
That has really helped knowing you didn't really even know what it was and that your best friend had it, and it didn't affect her life. That's so reassuring, thank you. Great to hear.
I think our main worry is the consultant mentioning short bowel syndrome and that the scan was striking.
Thank you so much again, positive stories are always reassuring.

OP’s posts: |
LilyJessie Tue 04-May-21 20:40:43

@ShootingStar94
Hello. Ah, thank you so much for telling me your story. It is so heart breaking to read. I am so very sorry for your loss.

The way you just wrote, really does sum up how we feel, and it's reassuring to know we are not alone. We wish it was simple Gastrochisis, but it isn't, and that's what is frightening. It is all the what ifs, like you have said.
We love our little girl, just like you love your little boy and it is hard. It is so hard, but your strength has really helped us tonight, thank you so much.

OP’s posts: |
LilyJessie Tue 04-May-21 20:43:55

@Ethelfromnumber73
Thank you so much for the link.
I have read that over and over again over the last week... Probably know it word for word now!
We don't seem to have simple Gastrochisis that is explained on there, and are really worried about long term problems.
But we arming ourselves with as much knowledge and experiences of people as we can to make the most informed and best decision for baby.
Thank you again for taking the time to help us, it is so appreciated.

OP’s posts: |
LilyJessie Tue 04-May-21 20:46:43

@Metallicalover
Hello, thank you so much for your reply, it's really appreciated.
Do you know if she has any long term problems? Any bowel/ any issues at all?
Our consultant discussed short bowel syndrome because of how much is exposed, which we are so frightened of. But he can't be sure until later/ birth.
It seems it can be really successful, and it's great to hear good stories.
We are just so worried because of the extra complications they already discussed. Thank you again for the time you've taken to reply. It is appreciated.

OP’s posts: |
Metallicalover Tue 04-May-21 21:20:57

She is absolutely fine no long term problems. She did have surgery not long after she was born.

otterbaby Tue 04-May-21 21:28:44

I'm very sorry this is happening to you. I gave birth to my daughter at 16 weeks due to a chromosomal abnormality (technically termed a TFMR).

I had a lot of guilt but I know that I only did it because of how much I loved her - she would have suffered immensely (if she had even survived the rest of my pregnancy).

I struggled with a lot of emotions about it - how unfair it was, why was this happening to us, are we making the right decision?

Whatever you choose, you are NOT a terrible mother. It is truly a decision that only you can make. And you'll likely second guess yourself for a long time.

Sending you a handhold x

TTC94 Tue 04-May-21 22:51:39

@LilyJessie

Hello, I am sorry to hear your worrying news.

Unfortunately, I can’t offer any personal experience or much advice.

But, please know that you and your partner will absolutely make the right decision and that there is no right or wrong decision here.

It’s evident in your post that you are a devoted and loving mum.

Wishing you positivity, comfort and light during this difficult time xxx

LilyJessie Wed 05-May-21 18:47:52

@otterbaby

I am so very sorry for your loss, thank you so much for sharing your story with me.

It's just been the worst position to be in and it feels horrible, all of the time. And people like you sharing your story with us, is somehow giving us strength to know there are other people out there who have felt the same, and how we feel is normal. I am so sorry for what you went through, you're so brave.

Thank you again.

OP’s posts: |
LilyJessie Wed 05-May-21 18:48:37

@TTC94

Thank you so much, it's just an awful time. And your reply means so much to me. Thank you. X

OP’s posts: |
Handsoffstrikesagain Wed 05-May-21 18:57:47

I have nothing useful to add OP I’m sorry other than to say that my heart truly goes out to you. You are in my thoughts this evening, as are all the other mums that have made difficult decisions. Being a mum is the hardest job in the world, in more ways than one. flowers for you lovely x x

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