Devastated

[darcie]

Yesterday my sister went for her 20 week scan, they found out that her little girl and spina bifida and fluid on the brain and that her baby would have no quality of life if she was to go on with her pregnancy, she was not be able to feed herself, talk, her lower body would be paralysed, her bowel and bladder wouldn't work properly, her whole brain was covered in fluid. So my sister had to make the decision that was best for her little girl, she is completely devastated and I wish I could take the pain away, she's so scared of giving birth natural and I don't know what I can do or say to help her through this. Yesterday was suppose to be a wonderful and exciting day but it turned into a complete nightmare. I just want to be there for my sister but feel so helpless. As a lot of you have been through similar situations I wondered if you be able to tell me what helped you and does it ever get any easier?

 

[emma_2011]

I didn't want read and run. I haven't been through anything like this and can't imagine the heartache your family is feeling right now. To be honest probably nothing you say or do will help her as she will come to terms with it in her own time and way. You just need to be there to comfort her, hug her when she nees one and when she needs someone to shout at. That's what sisters do. She is so brave to make such a big decision and is lucky to have amazing support around her to help her through this difficult time. Xx

 

[BabyShay]

I cant even begin to imagine what your sister is going through right now. I have not ever experienced this, and would not wish it upon anyone, I'm very sorry for your loss. My heart goes out to your family. I would just advise everyone to give her all the love and support possible to help her through this hard time. I believe it will get easier over time but she will certainly never forget. Very sorry again xx

 

[Vickieh1981]

I'm so sorry for your sister and your whole family. Our situation was different because Isabella had already died when we went for the scan so I never had to make any difficult choices.

You are of course welcome to post here but you may consider recommending the ethical loss forum to your sister too as everyone there went through terminations for medical reasons

Thinking of you all. I know she is dreading giving birth. Personally I still found some happiness after she was born - she was so beautiful and perfect and I was very proud of her although sadness is overwhelming at the time. xxx

 

[kiki04]

I am so sorry for your family

I havent been in this exact situation but I can tell you from a loss POV, just be there. Dont say things like, everything happens for a reason or you can get pg again etc etc as those things hurt. If she wants to talk about her daughter... share in that with her. Dont act awkward and weird if she talks about her. I know that from experience, when I say "When I lost my baby" etc etc or things my other children have said regarding our baby, people get quiet and say nthing making it awkward, leading you to think people dont wanna hear about "your dead baby" It is still her child and she has every right today tomorrow or ten years from now to remember and talk lovingly about her. I would also suggest to encourage her or others to take pictures of her daughter. I didnt deliver naturally, had the d&c as I was on the cusp of d&c not even being a possibility and regret it HORRIBLY! Now I wish I would have been induced and delivered so I could hold and take pictures of my angel... your sister may not feel it now, but she may later. Even if she doesnt wanna see the pics now, down the road she might.

Thats all I really have ATM but if anything else comes to mind I will be back. I am so so so sorry hun

 

[Nikki_d72]

I'm so sorry for your sister's loss. She's lucky to have a sister like you who would come on here and ask the question.

I didn't have to make that kind of decision, but did birth naturally and I would say just make sure someone is there for her when it all happens - tiny premmie labour is very different to normal labour and it may not be recognisable as what it is until her body is pushing her baby out, though I was in denial, so that may have been why, but it can all happen pretty quickly when they are that small. I won't lie, it is hideous to feel your body pushing out a baby you don't want it to and fighting it may may the pain worse, so if you can just help to relax her that may be better. Again my situation was a bit different as I knew at least one of my babies was still alive, I'm not sure what happens in this type of case, so sorry if that's not the right advice.

Will she be in hospital? If so make sure she has some gas and air or similar pain relief there just to make it a bit easier. The nurses may also be able to do hand and foot prints for her too, make sure this happens if possible, and try to gather as many keepsakes as possible, even if your sis doesn't think she wants them, as she will probably at some point and better to have them and not want them than the other way round. I agree with the other poster who said take pics as well, and encourage her to spend time with the baby if she is able, it may seem macabre, but it really isn't at athe time and does help a bit.

Maybe take over the practical bits for her - if there is a special blanket or something she'd like the baby to be wrapped in (it will be really tiny, about maybe double the length of your hand at most), you could bring that, and help her with the other things afterwards. We had a wee private gathering at the funeral directors with friends and family and released balloons when they were driven off to the crematorium, it may really help to arrange some sort of send off or funeral, so you may be able to help with that - the hospital often has some contacts with funeral directors and many will do lots of it for no charge or minimal fees. The worst feeling is walking away and leaving your baby behind, so at least if something is in motion for a goodbye then it feels a little better. Then just be there for her and listen to her, it will be really hard for all of you. I hope it goes as well as possible for her and I wish you all the strength in the world in your support for her.

So sorry again. xxx

 

[jennijunni]

I'm so sorry for your sister's loss. She's lucky to have a sister like you who would come on here and ask the question.

I didn't have to make that kind of decision, but did birth naturally and I would say just make sure someone is there for her when it all happens - tiny premmie labour is very different to normal labour and it may not be recognisable as what it is until her body is pushing her baby out, though I was in denial, so that may have been why, but it can all happen pretty quickly when they are that small. I won't lie, it is hideous to feel your body pushing out a baby you don't want it to and fighting it may may the pain worse, so if you can just help to relax her that may be better. Again my situation was a bit different as I knew at least one of my babies was still alive, I'm not sure what happens in this type of case, so sorry if that's not the right advice.

Will she be in hospital? If so make sure she has some gas and air or similar pain relief there just to make it a bit easier. The nurses may also be able to do hand and foot prints for her too, make sure this happens if possible, and try to gather as many keepsakes as possible, even if your sis doesn't think she wants them, as she will probably at some point and better to have them and not want them than the other way round. I agree with the other poster who said take pics as well, and encourage her to spend time with the baby if she is able, it may seem macabre, but it really isn't at athe time and does help a bit.

Maybe take over the practical bits for her - if there is a special blanket or something she'd like the baby to be wrapped in (it will be really tiny, about maybe double the length of your hand at most), you could bring that, and help her with the other things afterwards. We had a wee private gathering at the funeral directors with friends and family and released balloons when they were driven off to the crematorium, it may really help to arrange some sort of send off or funeral, so you may be able to help with that - the hospital often has some contacts with funeral directors and many will do lots of it for no charge or minimal fees. The worst feeling is walking away and leaving your baby behind, so at least if something is in motion for a goodbye then it feels a little better. Then just be there for her and listen to her, it will be really hard for all of you. I hope it goes as well as possible for her and I wish you all the strength in the world in your support for her.

So sorry again. xxx

This is great advice. I know for me labor was really very easy, but this was my 5th child. Also I recommend being in the hospital. I am very pro home birth/natural birthing, however, when babies are born this early, a common, and deadly occurence, is retention of the placenta which can cause you to bleed to death. Trust me, it almost happened to me, and it happens very, very fast. Our bodies are not ready to let go of the baby or the placenta so a retained placenta is very common, and very emergent. I also recommend not saying the usual banter, of "it was meant to be" or "you will have another baby," because they are hurtful. And the most important thing, is not to trivialize her loss. Often when we say we have mc a baby, most people think early mc/loss, but it is so, so different. This is a real, fully formed, baby, that was kicking and moving, and should be treated as such. The last thing, I know everyone moves on and forgets our pain, but we are not ready to move on, and we unfortunately dont forget, and even months later the pain some days can be so raw, so extra special caring, and being treated with kid gloves, and some concession to the way she may be acting is a must. It is so, so sad, and I am so sorry for her loss. It is wonderful of you to be so kind and caring, just be there for her. Hugs!

 

[katie21188]

So sorry to hear about your sister. I would recommend the nurses taking photos of the baby, we had photos taken of our twin girls and at first I wasn't so sure of it but they recommended us get the photos done and when we were ready to look at them we could. I am so grateful we have them at home, the hospital took some lovely ones. My favorite being the girls holding hands, it is amazing.
Another thing is the hospital did hand and footprints done and also dresses them in these tiny little gowns and beanies. We then got a spare set for the hospital that we gave to the funeral home to change them so I could keep their outfits they wore while in hospital. I have them at home and look at them once a week, they have their scent on it and I am so grateful to have them forever. I lost our girls at 22 weeks

 

[mhazzab]

I'm so sorry for your sister's pain, she's very lucky having you be there for her. I can't give any advice regarding how she will feel about having to make the decision as I didn't go through that. I went into premature labour at 23 weeks and for weeks I felt so guilty, like I should have been able to do something to protect my babies, so I would imagine she will feel terrible guilt, when in reality there is nothing she (or I) could have done different.

I totally agree with all the other advice people have given. We had photos and footprints taken at the hospital - although I didn't want these at the time, I'm so glad they did it anyway as they are my most treasured memories of my girls. We were given hats / blanket by the hospital, but not all places do this - if your hospital doesn't, maybe you could get some for her? I never really held my girls, and I was in shock and denial right after the birth, and refused to see them for a few days afterwards. By the time I saw them again, it was really too late to hold them - this is something I really regret. We were also given twin teddies - we put one with our girls in their little coffin, and kept the other in our memory box.

The chaplain at our hospital helped with the funeral arrangements - again, if you don't have this service at your hospital, perhaps you could help with this? I don't think I could have done it myself.

Other than that, afterwards, talk to her about her baby. I can't believe how many people have just ignored the subject with me, and it really hurts. Even though my girls didn't survive, I am so proud of them - they were so beautiful, but not many people want to talk about it. Let her speak about her daughter as much as she wants - if she's anything like me, she will cry bucketloads while she does it, but it means a lot when people are willing to listen, and also when they continue to ask about the baby weeks later

Maybe you can help her find some memorials for her baby. A few things I have done - bought a bench and rose bushes for our garden, and gotten hand / footprints made into charms for a bracelet. And a woman, Carly on www.namesinthesand.blogspot.com writes angel babies names in the sand at sunset and photographs them. This might be a nice thing for her to have to show off / display in home, as she may not feel she can share photos of her daughter with other people.

xx

 

[mummylove]

I cant imagine what ur sister is going through my thoughts are with u all