Looking for help for friend who will lose one of her twins

A girlfriend of mine is now 22 weeks pregnant with identical twins. Unfortunately, due to severe TTTS one of the twins will die due to heart failure. She has just been hospitalised until the birth, the doctors are aiming for 28 weeks because the small baby (which should survive) doesn't have enough placental function to survive much longer than that.

She has been told she will deliver by caesar.

I am visiting her as much as I can, which is about three times a week, just to keep her company. She's on bedrest in hospital because her cervix is shortening and they need the babies to stay inside for another two weeks at least.

I feel absolutely awful for her because she is going to be burying one twin whilst looking after the other twin who will be in NICU/SCN.

My questions are:

What can I do before the twins are born (aside from visiting, buying everyday things etc?)

What are the things that you would recommend doing once the babies are born? Especially knowing that one will probably not survive, may live a few moments or be born sleeping. I thought organising a photographer, any other suggestions?

What can I do to help with the funeral? What suggestions can you make to assist her - in terms of planning, knowing that she'll have had a c/s and has another child probably in NICU?

Thanks in advance.

Divvy, if you would like to PM me I can put you in touch with someone who could help with suggestions.

Oh dear Divvy :hugs: to you and your friend. Sounds like you are doing an amazing job supporting her. I, unfortunately, don't have any suggestions, i think the photographer idea is fantastic, not only will it give her some beautiful memories of what she did have (so to speak), but i'm sure it will help invariably with her healing, post birth. Do you know if she is going to try and express breast milk for the surviving twin in NICU? If possible, it may be a great form of support to her if you can be there for the times she is required to be at the hospital, such as for expressing, and so forth.

How long has she known about the TTTS? Obviously, although when first diagnosed, she would have been told that this may occur, it has been described to me that 'to a degree there would have been knowledge and some form of acceptance, but it could never prepare you for what happens'.
You seem to be staying very strong for your friend, and i think she is lucky to have someone so wonderful sticking by her in this tough time.

As my mum is also pregnant and is having twins with TTTS i have been very anxious about the health of my baby and how it will affect her depending on the severity of their mis/underdevelopment, and i think even as a neutral non-family support person it must be very difficult for you to witness what she is going through. Keep up the amazing job. I wish you both the best of luck, and desperately hope that she makes it to 24 weeks, so the twins can receive the medical attention that they require.

(scatterbrains mcgee isn't making much sense, but i hope you understand...)

Oh, Divvy it makes me so sad to hear this. Sometimes life just isn't fair. There is nothing that has sprung to mind but I will be sure to let you know if something does.

You are such a great friend and your friend is truly blessed to have you. I am sure that your friend is just thankful to have you there visiting and to have your support.

divvy :hugs: for you friend I know there is a group of photgraphers in melbourne who donate time to parents of stillbirths, or children with cancer etc i will email my friend and try to get the details for you she is one of the photographers

I am sorry to read about your friend.

Be there for her - she will need all the support she can get.
Having been down the TTTS road myself I know that nothing is guaranteed. She is pretty sure that she will lose one twin but there is nothing to guarantee that the other one will survive. So please don't put too much emphasive on the one they expect to live.
I t is still very early days yet. I was told that before 28 weeks things wouldn't be good for either of my girls. But so many things can go wrong with this condition and if the worse happens she will be verys grateful to such a kind and considerate friend as yourself.

Love and my best wishes to you and your friend.
Debbie

divvy, i am so sorry for your friend's upcoming loss and trauma. i haven't any idea about what to do for the nicu twin. we had a wonderful nurse who made sure we got a lock of hair and hand prints and foot prints. a friend gave us a special book to put everything in and to write everything down. it would have been nice to have plaster to make casts of our son's hands and feet. anything is so precious. knit a hat for his/her head or bring a special toy for him or her to hold close. anything physical that can be a reminder of the child that is lost. you are a good, special friend, and that is the best thing that she will have. just let her mourn for her lost child, and be there to witness her pain. xxoom

I totally agree with Auntie M. Just be with her and let her feel the pain. So many people try to make it better and that really only delays the intense grief that she will feel.

When I lost my son's one of the midwifes baked a birthday cake and gave it to us. It was the most touching gesture because she had shown that it wasn't that our son had died, it was more so that an angel was born.

I have hand prints, foot prints and a lock of hair. I also wished that I had more photos because it is all a blur at the time and now I spend hours pouring over all the details of his face. Perhaps the surviving twin would like a photo with their sibling. I don't know if it would be possible but even if you could get a black and white photo of the twins hands or feet together, it would be very treasured by the surviving twin I'm sure.

The last thing is a practical thing, cook meals, get her keys and do a complete clean of her house, help with the laundry.

Grief is such an unpredictable thing, it makes us sometimes say and do things we wouldn't normally so please don't be offended if one day she wants you to be with her and the next day she won't take your calls. Just be there, she won't forget it. This is the begining of a very long journey, she is very lucky to have a wonderful friend such as you.

Lv Spring

Ohh what a sad sorry i am crying just reading it.

You sound like u are being an amazing help to her and support.

There is a company in melb that comes to hospitals and does the moulded hand and foot casts that are gold or silver plated. the hospitals should have contact details for them.

As other have said cooking and cleaning and photos would mean a lot to her i am sure.

Firstly, I really feel for your friend. A good friend of mine also had TTTS, and it was a highly stressful time for all, but they had a good outcome with no major lasting effects known (as yet). As a mother I can't imagine having to go through what your friend will. :cry: It sounds as though you are being a really lovely friend to her, well done.

Encourage her to make full use of services such as social workers etc - she may not want to pursue it, but it will help in her recovery. You could even speak with the hospital staff now to find out what the usual procedures are in the situation of loss, so you can support her fully. The hospital staff may even be able to give you some ideas regarding the questions you've asked here?

I think it's important to acknowledge both twins equally i.e If you buy a card & teddy for one, buy it for the second twin too. Talk to your friend about the twin she lost, if you are strong enough then look at photos of him/her with your friend.

I'd be buying her a journal (if she's not already using one now) so she can record her thoughts & feelings leading up to the birth, then about the birth itself. I'd also give her a magnetic notepad, and tell her use it when she gets home to write anything & everything down that they need help with around the house etc - even if it's just things like folding a basket of washing - so that when you (and others) visit they can have a quick glance at the list stuck on the fridge to see what they can help with.

As for the photography, there is an Australian group of photographers which have formed a charity to take pictures of premature or sick babies, and I believe also stillborns. I got in contact with the service for my friend whose baby was born 6 weeks early - they were fantastic and my friend recieved a CD of the 20 photos taken plus 4 prints at no charge whatsoever.

Your friend may or may not want photos, but personally I think it could help her grief in the future, so if you are interested the website is the Australian Charity of Child Photographers.

Eden.

Thank you all so much for your help and thoughts. Rach has very helpfully put me onto Jessie at ACOCP who has been an absolute marvel.

Natalie is now 23.5 weeks and both babies are still inside and alive. She turns 24 weeks on Thursday. They are still not sure whether Twin B will make it, and what sort of disabilities s/he will probably have (if any). However, last scan showed Twin A's fluid around the heart hasn't gotten any worse. This leaves Natalie with some hope, but she's still very confused about the whole situation. She's gone from - you're losing both, you'll lose Twin B, you'll lose both, you'll probably lose Twin A, you definitely will lose Twin A, Twin B might be okay, Twin A isn't getting any worse... the poor girl's head is being done in. I guess the only thing to help will be time and prayers.

Thank you for the other suggestions - I will get her a journal and take it in tomorrow. The hand/footprints I think are being arranged by SANDS and she's probably having counselling through them too, in due course.

It's so hard - I feel so awful for her. But as long as the babies are hanging in there, there's still hope.

Thank you all so much for your help and support.

Divvy I am so glad to be of help Jess is a wonderful person ...........

give our love and thoughts to Natalie

:pray:for both her little ones :hugs:

Divvy, I totally relate to what your friend has been going through. Prognosis can almost seem to be changing daily and it is all so confusing as well as extremely upsetting.

Your a good friend and that's what she needs.
She is in my thoughts.

Hugs,
Debbie

Divvy
get on to the brevement officer at AMBA- they have girls that have been exactly through the same thing and have a support network set up as well.
they will know what to do!
if you need a number of who to contact- just let me know and I can get it for you!
you are a jem of a friend!!

you are such a great friend, i will pray for you friend.And a hug for you both.

Thank you all for your suggestions.

Oscar Paul and Harry Jack were born late yesterday at 24 weeks, and lived for about 15 minutes before passing on to Heaven.

I don't know what else to say. But thanks everyone, anyway.

*huge hugs* Divvy.... sending you love and strength and to your good friends too for this difficult time...

Many :hug: 's to you Divvy. You must have been such a wonderful support to your friends in this time and i am sorry to hear this news.