Termination of pregnancy due to medical reasons

[Newdreams]

Hi I am sorry if this is in the wrong place I don't mean to offend anyone. I am 19 weeks pregnant and have been told my baby has bilateral renal agenesis, this is a fatal condition which means the baby will not survive outside the womb and currently has no amniotic fluid. I have been give the option of termination or waiting for nature to take its course (I have another thread about the build to the diagnosis) but I really wanted to know if anyone been in similar position and what did they chose to do and how did they manage to deal with the emotional side of things. My heart saying to wait bur my head is saying to opt for the termination but I feel exhausted I can't think straight and just wanted to know some other people's experiences.

I found it so heartbreaking to read your post OP I just had to reply to send love ❤.

I haven't experienced anything like what you are going through and cannot imagine how devastated you must feel, my heart breaks for you 💔.

I had a MMC in May 2021, discovered a few days before my 12 week scan. Baby's due date was December just gone and I'm finally starting to come to terms with it, now that that milestone is crossed. Anyone who has lost a baby knows you will NEVER forget that baby, so please don't be too hard on yourself whatever you decide. You will do what is right for you, your baby and your family and whatever that is precious, your baby will ALWAYS be your baby and a treasured memory in your hearts and family. I now ours is ❤.

So glad you are posting on MN and not feeling so utterly alone as it might otherwise feel.

Love and hugs xxx

@GirlMama21

I found it so heartbreaking to read your post OP I just had to reply to send love ❤.

I haven't experienced anything like what you are going through and cannot imagine how devastated you must feel, my heart breaks for you 💔.

I had a MMC in May 2021, discovered a few days before my 12 week scan. Baby's due date was December just gone and I'm finally starting to come to terms with it, now that that milestone is crossed. Anyone who has lost a baby knows you will NEVER forget that baby, so please don't be too hard on yourself whatever you decide. You will do what is right for you, your baby and your family and whatever that is precious, your baby will ALWAYS be your baby and a treasured memory in your hearts and family. I now ours is ❤.

So glad you are posting on MN and not feeling so utterly alone as it might otherwise feel.

Love and hugs xxx

In all honesty posting here has saved me even when I'm rereading the old replies to my post it just offers a measure of peace and there has been so much suggested on this thread that hadn't even occurred to me. Dh has gone into protection mode he trying hard to be strong for us but just wants me to be OK and for us to make the right decision that we both happy with. He nearly lost me after birth to my ds so think he so anxious about the birth this time round. He has been great with his mum tbh since the start of the pregnancy he suggested I have limited contact with her she a nice woman but not sure if she means the things she sometimes says but I can't think of her now it really broke me today.

@GirlMama21

I found it so heartbreaking to read your post OP I just had to reply to send love ❤.

I haven't experienced anything like what you are going through and cannot imagine how devastated you must feel, my heart breaks for you 💔.

I had a MMC in May 2021, discovered a few days before my 12 week scan. Baby's due date was December just gone and I'm finally starting to come to terms with it, now that that milestone is crossed. Anyone who has lost a baby knows you will NEVER forget that baby, so please don't be too hard on yourself whatever you decide. You will do what is right for you, your baby and your family and whatever that is precious, your baby will ALWAYS be your baby and a treasured memory in your hearts and family. I now ours is ❤.

So glad you are posting on MN and not feeling so utterly alone as it might otherwise feel.

Love and hugs xxx

Also wanted to say I'm so sorry for your loss too I can't imagine how hard it must be.

@Notwithittoday

Just wanting to send love your way. Takes my breath away how hard being a woman is sometimes. I’m really sorry. Not the same thing but when I had my surgical management and they walked me down to theatre I thought all the time about my dd at home and how every step I took took me closer to going home to hold her and hug her. It helped at that moment in time.

Honestly Ds has kept me going I know I have been a crap mum this last two weeks but just seeing him hugging him it's giving me a comfort without which I don't think I would be here today.

@Santahatesbraisedcabbage

Maybe block mil for now. Let dh deal with /filter her messages. You must definitely don't need to be receiving any awful texts. So sorry this has happened. Maybe have a blanket personalised when you have chosen a name. Your baby having a written down name may bring a tiny bit of comfort..

Before all this happened we talked about names and I suggested waiting until after the 20 week scan to see if they could see what we would be having. How bittersweet it is now.

@Double3xposure

It’s ok to feel totally lost and confused and to not know what to do . But unless there is a medical reason that you need to decide now, you have time. You don’t need to feel rushed into a decision that you might regret later.

You might need to sit with your grief and loss for a little time until you know what is the way for you. There’s no right or wrong way to do this - only what you feel is best for you and your family.

You might want to take the time to decide how you will remember your baby. Do you want to give him / her a name, have photographs, footprints, certificates etc, hold them and bathe or dress them, choose a special outfit ?

Do you want to have any family members come and see you baby after you have given birth, such as your mother ?

This charity gives remembrance photos
remembermybaby.org.uk/about-us/

SANDS can provide certificates if your baby dies before birth or 24 weeks

www.sands.org.uk/sites/default/files/Sands%20-%20Saying%20goodbye%20to%20your%20baby.pdf

If you have any faith ( or none ) you can ask the hospital chaplain to come and bless / pray for your baby, if you would like that.

I am sorry OP. Having been through similar at 17 weeks I second all of this. I hadn’t thought any of this through and with hindsight there’s a couple of things I wish I had done differently.

I’d also second contacting Tommys who were absolutely amazing to me and in no way judgemental just completely kind.

to you. X

As @Fabuleuse said - have you read this? Exactly the same issue and their baby was saved. Worth checking out?

www.google.com/amp/s/www.wsj.com/amp/articles/we-overcame-a-grim-prenatal-prognosis-11550519559

@Aphrodite31

As *@Fabuleuse* said - have you read this? Exactly the same issue and their baby was saved. Worth checking out?

www.google.com/amp/s/www.wsj.com/amp/articles/we-overcame-a-grim-prenatal-prognosis-11550519559

I have read this and will mention it to the medical team but from everything I read on the official bilateral renal agenesis website I believe in America they don't class as fatal condition and trial the saline infusion and await transplant after birth however in UK its different unless I'm mistaken there hasn't been any cases like the American one in the UK but I will speak to the consultants about this on Tuesday I have got some questions written down and it's one of them last time I was so under prepared I barely asked anything.

I'm so sorry for your loss.

All these suggestions are helpful because atm I couldn't even tell you what day it was. I keep coming back and trying to think ahead I find it so difficult to imagine the baby being here it's pain like I can't explain so I can't think about it too much.

I am thinking to contact Tommy's just for some support dh has been encouraging me to do so for a few days I just feel so nervous I'm not even sure why.

Sorry last post was for you

How completely heartbreaking to feel your baby move inside you and be faced with this nightmare. I have no advice at all, but wanted to send love and a big hug. You're here talking about it and trying to find your way through it, and I think that makes you stronger than you know xx

Have just read your really sad post ..as a mum I have absolutely no words of wisdom but my heartfelt thoughts for you ..💔

I am thinking to contact Tommy's just for some support dh has been encouraging me to do so for a few days I just feel so nervous I'm not even sure why

Of course you are nervous. Having to talk about it out loud makes it even more real. And because they will be kind and sympathetic it might make you cry.

Or perhaps you won’t be upset at all, you will be numb and factual and then you will worry that you come over as some sort of cold hearted mother who doesn’t love her baby.

Many of us have been there and we understand. We know how hard this is and how brave you have been to post on here.

I know it’s hard for your DH too and he will grieve in his own way which might be different from yours. Perhaps he is finding it a bit overwhelming and he doesn’t know how to support you - which is one reason he might be encouraging you to phone one of the helplines.

So please do think about it. You might call and then not be able to speak, which is ok. Sometimes just hearing someone answer can trigger an overwhelming wave of emotion.

If you want , you could write down the first few sentences and just read them out. Sometimes that’s easier for some reason.

Or if it’s too hard to talk, just say “ I’m sorry I thought I was ready to talk but I can’t, I’ll phone back “ and hang up. They won’t be angry, they will understand.

I’m so sorry, OP. It is devastating. I am going through this myself at the moment - I was not as far along as you (14 weeks) and our baby had an exceptionally severe / life limiting heart defect. We ended the pregnancy on 31/12. It isn’t something that you expect will ever, ever happen to you and the depth of emotion and confusion/anger/grief can be very difficult to deal with. I am trying to take it hour by hour and not force anything. I am thinking of you and sending a virtual hand hold. You are not alone and whilst this is heartbreaking, we will get through it.

@ROBYN

Thank you for replying and your words you put into words and described my feelings so perfectly. It's crazy but since this has happened I haven't stopped crying but sometimes I'm with ds and trying not to cry and than I feel like a bad mum because how can I stop crying for the baby I'm about to lose. I don't know if that makes sense I don't even know if any of this is to make sense.

I know dh is grieving too I keep saying sorry to him not being able to to have healthy baby I feel like I am letting him down we tried for so long before we saw the line appear on the test. He keeps saying right now we know sadly our baby won't make it but we need to make the right decisions for all of us it will all be done in ultimate love for the baby.

I think Tommy's are closed today will definitely try ringing them tomorrow. And just take it from there and if I am unable to speak I will just explain and try again when ready. I think that feels like a good way to go about it. I'm so scared of how real it will make it me actually talking to someone about it but maybe it needs to feel real.

@leaf86

I am so sorry for your loss and so sorry you have had to go through this. Sending you love and wishing the outcomes could have been different for us all.

I was thinking to make contact with arc or Tommy's just feel nervous as I don't really have decision made so not sure what I'm asking for really. But also don't want to get judged for either decision I don't know if that makes sense. I had a talk with dh about doing something special to us with ds before we do anything just for memories I know ds doesn't currently understand or have the ability to understand what's happening but one day I would like him to acknowledge the sibling we lost.
ARC are there to talk through things with you - no pressure either way from them. Also no judgement, though I've found SANDS are totally judgement free too. I've had nothing but support from therapy groups, midwives etc and I remember that feeling of worrying about judgement (still get it sometimes). If you feel you'd like to do something special you should go for it. My daughters v young but we've tried to include her in the process (in an age appropriate way).

@heywhatswrongwitu

I was thinking to make contact with arc or Tommy's just feel nervous as I don't really have decision made so not sure what I'm asking for really. But also don't want to get judged for either decision I don't know if that makes sense. I had a talk with dh about doing something special to us with ds before we do anything just for memories I know ds doesn't currently understand or have the ability to understand what's happening but one day I would like him to acknowledge the sibling we lost. ARC are there to talk through things with you - no pressure either way from them. Also no judgement, though I've found SANDS are totally judgement free too. I've had nothing but support from therapy groups, midwives etc and I remember that feeling of worrying about judgement (still get it sometimes). If you feel you'd like to do something special you should go for it. My daughters v young but we've tried to include her in the process (in an age appropriate way).

Thank you I am going to try calling them tomorrow. Today has been another rough day both dh and I have broken down to many times to count. Just don't know how to make the best decision don't know how to undo the plans we had made it feels so hard and unreal but at the same time like some awful night mare.

My ds has special needs not sure how much he would understand at the moment but I'm hoping one day when he is older we can explain it to him. I just hope the baby knows how loved they are and how much we wanted the baby and if there was anything I could do to change the outcome I would do so in a heart beat.

I was in your position 2 months ago. It's hard and awful and I'm so sorry. Of course you love your baby and you're trying to make a decision based on that love. If you can reach out to them then do - there are supportive groups on Facebook too.

Just got back from the hospital, the consultant tried very hard but was so difficult to scan because there is no water but he confirmed baby has no kidneys or bladder He also said the spine looked a bit disformed?
They were very supportive and discussed both options dr was very careful to ensure I knew the risks of continuing because of the problems of my last pregnancy and birth. They are calling tomorrow just to see how I am feeling and take it from there. I feel numb it feels like it's not really happening to me. If that makes sense.

@Newdreams I'm so incredibly sorry for you're going through. I lost my first baby at 24 weeks. Movements stopped and my scan confirmed no heartbeat. True knot in umbilical cord. Anyway I decided to go home to process it and came back in the next day for termination. Obviously you're in a slightly different position but I just wanted to say that whatever you decide will be the right decision and it's your body, your choice. You're exactly right thought, that is exactly how I felt. Like it was happening to someone else and a sense of complete disbelief. Almost 6 years on it still feels like a dream. Anyway sending you so much love and please be extremely kind to yourself ❤️

So Sorry you are going through this, I have been there - DS1 was just turned 3, we hadn't told him I was pregnant thankfully, it was thinking of him which made the decision for us.

We were advised at 14 weeks the baby had a 3% chance of surviving to birth, babies with the condition then have never lived past 24 hours after birth - There was no way I could continue with that knowledge, allowing my stomach to grow and DS to ask questions all the while knowing there wouldn't be a baby at the end of it. My termination was at 16 weeks.

This was April 2019, I fell pregnant again with a healthy pregnancy in October 2019 - DS2 was born in June 2020 with 0 complications (it was a huge worry to me that we wouldn't be able to have a 'normal; pregnancy after this)

Sorry u had to go through this op. Had the same position as u 16 years ago with my daughter, but couldn't end the pregnancy. Was told she would be still born after 28 weeks with severe heart defects and other health problems. Carried the pregnancy to 31+6 when i went in to labour and only lived for 20mins. I had family support to get me through it all but it does not make it easier. Time was my biggest healer and also had 3 children after. I now have 4 beautiful sons (my youngest born 4 weeks ago) but will never forget about my daughter ❤. It will get easier but you will never forget about it.

Thank you for all the messages it actually helps to hear other experience. Just had a pretty exhausting chat with dh I think we have decided to terminate I don't know if that makes me a terrible mum but this is being done solely out of love I don't want the baby to suffer and I can't imagine going through full pregnancy putting myself at risk of all the complications I had last time and than for me not to have a baby or bring my baby home. I don't know how to cope with either scenario. I'm also doing this for my son he requires so much support day to day I need to be here for him as much as I can't be there for my baby. I'm so sorry of I have offended anyone it's not intention and this isn't a decision I have come to easily even typing this now is killing me because it feels so real. I can feel my baby move and its breaking me. I don't think I'm ever going to get over this but I feel like it's not happening to me I feel like I'm numb to the pain this is causing. I feel like there is something so fundamentally wrong with me I can't even nurture my baby. I'm so sorry.

You're not a terrible mum, you're putting your children first. Do call ARC or SANDS if you need to. I'm so sorry x