How do I support my sister who is facing termination?

[emoo777]

My sister found out today, after amnio, that her baby has Down's at the extreme end of the scale. She has been through a lot trying to get pregnant and it has hit her like a tonne of bricks. She lives in Hong Kong so it the other side of the world from most of her family. What can I do to support her? All of her friends have babies, which she is finding really painful right now. She is booked in for termination on monday. Are there any support groups she can go to? She is scared of looking on the internet and worried about her age (she is 36). Any advice greatly appreciated.

I am sorry that your sister is going through this.
I hope that someone can come along and give you the right help.

Can they tell that the baby has down syndrome at the extreme end of the scale? I didnt think that they could do that.

You dont have to answer that, I am interested but understand if you dont want to answer.

I hope someone comes along soon to help.

Am so sorry to hear this. I think all you can do is be a very supportive ear for your sister, listen and offer comfort when she wants to talk, and keep in contact daily.

I'm sure she has thought long and hard about this very difficult decision to terminate and all you can do now is reassure her that you support her in this.

This particular part of mumsnet is a wonderful support for woman such as your sister, who find themselves in this horrendous situation, and I would urge you to encourage her strongly to log on here - she will get unconditional support, vital in these awful early days.

As for her age, 36 is still very young and she has lots of time to have the family she dearly wants. I am sure there must be some RL support available to her locally, and this is also really important. She needs to be able to talk this through with someone who has professional training and will guide her through the maelstrom of feelings she's undergoing.

BTW, Mrs DeVere it is true that the amnio will only diagnose the presence of Down syndrome and not the severity. I'm thinking that the OP's sister has felt the need to (completely unnecessarily, imo) justify her decision to terminate her pregnancy by mentioning the severity of the condition. Just wondering why you felt that was an important point to pick up on .

Because I was genuinely interested. I am not expert enough in the field to know if it is or isnt possible. I thought it wasnt but I was not sure. I am a woman in my 40s. This subject is not unimportant to me.
There is no need for the

There was no angle to my question and I made it clear that the OP didnt have to answer me.

I offered my sincere support but couldnt offer much else but didnt want the post to go unnoticed. As you see there have only been my and your responses. You have offered the same sort of thing as me - empathy and sympathy.

Perhaps not best to go looking for an argument on a sensitive thread such as this?

I am sorry to hear your sister is going through this. I have terminated two pregnancies for fatal fetal abnormalities,and found much comfort and understanding on the thread here entitled 'women who have chosen to terminate...' (sorry I don't have the link to hand). I agree that your sister would find comfort and reassurance here.

Since the two terminations, I have had a healthy baby. Your sister is far from too old to have a healthy baby, and T21 is mostly a random occurrence, and thus v unlikely to recur.

In terms of how you can support her at the moment, as she faces the termination and the time afterwards, then I think being there to listen to her/reply to her emails (however she wants to communicate), but also following her cues, so not fussing too much over her and allowing her to set the tone for what you talk about (she might want distraction as much as comfort) and how you refer to the baby (some women feel very strongly that they would like their families to acknowledge the baby as a person they have lost - others very much want to think of it as a foetus rather than a person - try to follow her lead on this). If she is worried about the process, it might also be worth her posting here as lots of us have been through it at similar stages of gestation.

In response to the earlier debate, yes, of course amnio doesn't show whether it is severe or not BUT the scan that presumably triggered the amnio can - ie heart problems etc can be seen then. The amnio may have 'explained' the severe problems already picked up on the scan.

I feel very strongly for your sister, as I think it is all the harder when this is her first baby and she has had a struggle to conceive.

Thank you for explaining that to me cant. I wasnt trying to start a debate, I wouldnt dream of doing such a thing on a thread like this. I was asking a genuine question and I wouldnt have asked it if the OP's sister had posted.

I am very sorry to hear of your losses.

Apologies for 'bunfight', I'm sure it's the last thing you need OP. You sound like a lovely caring sister, and that's all you need to continue to be - the unconditional support and the soft shoulder.

Mrs DeVere, apologies to you too, I'm probably overly-sensitive to comments on this topic, for personal reasons .

OP, your sister will get past this and there will be better days ahead. Right now it's so fresh and raw for her, notwithstanding the fact that her hormones are all over the place, and she has to watch her friends with their precious babies.

Please, please point her towards this section of Mumsnet. Women based all over the world post on this very sensitive topic, and are a wonderful support.

Thank you for your response. I think it is an interesting question in fact and my answer is only partial, ie I know some severe problems are picked up by scan at that stage but others will not be. Also some presumably could rectify themselves. So much isn't known. It's very hard to be plunged into this.

And also it feels very isolating, because its not something people talk about much.

I lost one baby at 13 weeks and another at 20. Neither could have survived. The first had turners syndrome, which isn't fatal in itself necessarily, but they knew the baby wouldn't make it as soon as they began to scan. So turners caused the fatal problems, which were the reason I terminated. I assume the OP's sister may be experiencing something vaguely similar with T21. The second time at twenty weeks it was discovered my baby had bilateral renal agenesis which is incompatible with life.

But I am unusual in having different fatal problems, twice, your sister shouldn't need to lose hope and I don't mean to tell my story to discourage her, as I have two lovely healthy children now.

I am sorry you were upset by my post. I am sorry that you have reason to feel sensitive about this subject.
I am the last person to judge. I understand that it is not always the case and can understand your sensitivity.

I want to assure you that there was no angle whatsoever to my question and I was in no way looking to start something.

Anyway - best I dont post anymore. I cant offer any practical support apart from the perspective of a bereaved mother.

OP - be there for your sister, listen when she needs to be listened to, allow her to talk if she needs to.
You cannot save her from the pain but your care and support will make a difference.
There are some wonderful women on MN who will share their experiences in order to help your sister.

Cross post... I agree with Homemade Chutney. Send your sister here! No bun fights, just support from others who know how it feels.

How sad Icant.
I am so sorry that you lost your babies.
No people dont talk about it much. They dont like to talk about the loss of a child at all.
That is why places like MN can be such a help. That is why people like you sharing your experiences is so generous.

MrsDVere, I am sorry to hear about your loss. I guess we are all sensitive. Your advice to the OP is so right, and you have every right to ask questions. For one thing, medical knowledge advances pretty fast... sadly it doesn't necessarily solve the problems it can uncover as we know...

On a tangent, I just looked at your profile mrsdevere, and your daughter was beautiful. Her eyes sparkle with life in the photo. I am so sorry that you and her brothers lost her. It is very unfair.

Thank you.
None of it is fair. Losing a child, however it happens, whatever the circumstances is totally unfair.

I think what this thread shows is the incredible pain of loss. Losing one's dreams and aspirations for a life that might have been. There is no point in trying to push the pain away, or jolly it along. It must be endured, with hopefully the support of friends, be they real life or on boards like this, and with a professional listening ear. Some things in life are just irredeemably sad, and all we can do is acknowledge that truth and somehow struggle through it.

Mrs De Vere, I'm so sorry for my harsh words. I know I am overly sensitive, and obviously misinterpreted your genuine question. I'm very very sorry for your loss, much more than I have ever experienced.

OP, sorry for the hi-jacking. As you can see, it's a very emotive topic, but there's no shortage of support and caring here.

There is no need to compare our losses homemade. I dont. A loss is a loss and the pain is just as bad for you and it is for me.

I dont know what you have been through but I suspect it is easier for me to talk openly about my loss because people are more likely to offer sympathy. Of course people still say stupid and insensitive things but I strongly suspect its worse for women who have been through termination/loss in these circumstances.

Wow so many responses, thanks so much for your concern. I am a bit shocked to find out that you can't find out the degree of Down's from amnio? Whilst I feel that my sister's choice of termination was totally a personal choice I know she was very worried about my opinioin on this and so I am now concerned she may have felt the need to justify her choice.

I am so so sorry to hear about the pain everyone has been through with their loses. I have felt sick with pain for the last 24 hours and it is not even me going through it so I can only imagine what it must have been like for you guys. Big hugs.

Hi emoo, I'm sorry your sister is going through this, it's one of the worst things that a person can go through. I echo what has already been said, especially about taking your lead from her. I've had two terminations for medical reasons and my sisters (not local) emailed me a lot just asking how I was, whether I wanted them to ring and just generally kept in close contact. I often didn't want to talk as I'd just get too upset but was better exchanging emails.
For what it's worth, I have terminated for Down's syndrome (there were other complications too, there often are, which sounds like might be the case for your sister) and one thing I found helpful to know was that about 90% of people who find out their baby has Down's prenatally do terminate.
Do direct your sister here, there is a lot of collective experience here, sadly, but there are also plenty of people who've gone on to have healthy babies and plenty of them are older than 36.
Wishing you all lots of strength.

Hi, on phone here not laptop and rushing... but your sister will have seen a consultant following the amnio results, possibly, probably, the same person who did the amnio. That person will have done a scan while performing the amnio and may have waited to report what she or he saw in the scan when giving the amnio results, if that makes sense. In other words, your sister may have received the result of the amnio (T21) at the same time as the conclusions of the scan (severe complications) hence the way she reported it to you.

I think people do fear being judged, and honestly nobody really knows what they would do in that position. It is horribly hard. You sound like a lovely sensitive sister for trying to support her through it.

There is also ARC in the UK which helps people talk through future options, not sure about that from overseas though.

I wish her strength on Monday.

Thanks again for your posts. I looked at the ARC website and it looks great so I have passed this on.

I think the information about her having the 'more severe' form of Downs came from my mother in hindsight and just reflected her lack of understanding. It reflected the fact that there are also mosaic forms but this isn't the case for her.

I just had a long conversation with my sister and she is holding up, but obviously still devastated. She is really scared of regretting her decision too, but doesn't feel she could cope if she doesn't go through with this. She does have a bit of a history of depression.

Thanks again for your support and stories and I wish luck to all of those hoping for a healthy child soon.

hi emoo you have had a lot of good advice here and a real insight into how complex the mix of guilt and emotion can be. i thought i would add a couple of things i appreciated when i had a termination (i have also had 2 one at 26w and one for downs at 14w):

• my cousin sent flowers which really cheered me
• texts from friends asking if i was ok and offering to chat if i needed in the weeks that followed/preceded (giving me permission i suppose)
• i wanted to talk through the birth in the same way i have with my live births it was intense and i wanted to analyse though i understand not everyone will but you could ask. i also wanted friends and family to see my pictures so they could understand it was a baby i lost (the first one)

my nuchal scan with the baby with downs showed hydrops which is where water is retained under the skin and ultimately where the organs should be because the heart is in arrest. from what i can tell outlook for a fetus with hydrops in the first trimester is extremely grim. I decided that it probably indicated that the downs was more severe because the heart was in arrest. It's possible your sister has come to the same conclusion, my mum has not told her friends about my second termination in case I am judged (!) possibly your mum has added the more serious bit for a similar reason. whichever way personally I could not have let the baby grow more to find out how seriously affected the baby was as i felt the earlier the better.

Are you able to visit your sister some time? I guess that might be appreciated. I hope you are all doing ok x

Manitz's post reminds me that the only people I talked to in detail about the actual labour and deliveries were my sisters. It's probably painful to listen to but I really needed to tell somebody about the experience.
I hated being sent flowers though, I love flowers on happy occasions but after such a loss found them a constant reminder and couldn't wait to throw them out. It's a personal thing though of course.
It's very hard afterwards mentally too, so I'd also suggest your sister find out how she can access some sort of counselling or support. Again, it's not for everybody but I found it useful in the first couple of months.

its true that what works for some will not work for others (as you can see from eggletina and my different advice) but I have found in all sorts of grief that people ignoring the elephant in the room is worse than doing soemthing which is slightly wrong. I guess you will know what sort of person your sister is, I wanted to pamper myself. x