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Hi Raemie,
So sorry to hear about this awful situation, its a horrible thing that you are all dealing with. Your sister & her husband are going to need a lot of support and all you can do is be there for them.
You’ll have to take each day as it comes and just be there for her as much as you can. That’s all you can do and just support them in anyway they need.
So sorry for you all. Take care.
Hi there..my sister is 36 weeks pregnant and her baby was diagnosed with Edwards syndrome on may 23rd..it means that he will not live for long once born..she is due on 7th august and since getting the news the whole family as you can imagine is devastated..the closer we get to my sisters due date the more upset we are all getting..my sister and brother in law are trying to keep positive and keep some kind of normal life going for my 7 year old niece..i just had a baby in April and i’m finding it hard and feeling just a bit guilty that my baby is alive well and healthy..my sister hasnt really held her which is totally understandable but i’m hoping in time she will find some comfort in my daughter and she will help her to heal in some way..i’m hoping that when my nephew is born he will survive long enough for the whole family to meet him and cuddle him..i just dont know how long we will have him for..he could live for a few hours or a few days..i cant bear the thoughts of my beautiful sister and brother in law having to go through the loss of a child..no one should have to be thinking about funerals for a baby that hasnt been born yet..its heartbreaking..
Thank you..they both know how much i love them and that i’m here for them ..if i could i would just love to throw a protective cloak over them and my niece and block out all the pain and sadness..
Oh Dear that is terrible sad, your poor sister. i dont know what to say, its something that none of us would like to deal with. I hope that the hospital will make sure they get all the emotional help and support they need.
Just a little idea for you, i gotmy boys hands and feet cast from a lovely Drogheda woman (she will travel to most of the East Coast) The casts are stunning, while doing my boys she was telling me that she does many stillborn or babies who die soon after birth… It might not be something you would think of at the moment but something she could treasure forever..
http://www.little-impressions.com/partners_ireland.htmlAlso the Jewellery Tree on here do some lovely silver hand and feet impressions on necklaces and charms.
i know it wont help her grief at the time, but when things settle down it might be nice to have as keepsake
i will say a prayer for you and your family xxxxxxHi,
Sorry to hear ur family have had such terrible news, I had a similar experience 3 years ago, my daughter was diagnosed with triPloidy, they initially thought it was Edwards syndrome. I was lucky to have my daughter for 3 weeks and I hope ur sister gets some time to cherish her baby too. I brought her home for the last week and It was best thing we done as she was part of the family and everyone got to meet her.No one knows what to say, nothing can make it any easier but u will all get thru it, one day at a time, like girls have said get the handprints or footprints done and lots of pics and videos, there’s a shop in drogheda does tiny clothes that fitted my daughter she was only 2lb but it meant alot to ne to be able to dress her and act "normal" with her,,
Wishing u all lots of strength for the future and I’m always around if u or ur sis need someone t chat to!
L xx
Thank you all for your kind words..my sister has been talking about getting his hands and feet cast in clay which i think is a great idea..when pregnant with my 2 girls i had my belly cast and it really is a lovely way to capture a moment in time..it took me and my partner 5yrs of grueling fertility treatment to have my eldest daughter and we wanted something to remind us of it..
i know we will get through this as a family but its going to be hard and the road is going to be a long one..So so sorry to hear about your poor sister. God help her.
The same thing happened to my friend three years ago. She brought her daughter home & she lived for three weeks. She was beautiful, just perfect to look at, it was hard to believe that there was anything wrong with her. Jack & Jill foundation were fantastic to them.
Take care of them & yourself. Life can be so cruel sometimes. You will be in my prayers.
what exactly do the jack and jill foundation do?do they provide counselling for the parents after the baby has died?…i am worried that there will be no aftercare for my sister, bro in law and niece when he is gone..
Jack & Jill foundation are fantastic charity, they get absolutely no funding from the government, all through fund raising. They provide nurses to mind baby during the night, they also give great support. I know my friend was really impressed with them.
There is another charity that also supported them, they are specific to the syndrome, sorry i cant remember the name of them but i could find out if needs be.
They got loads of supports after their daughter passed away, they even had weekends aways to barrettstown for the family. Their two older kids had counciling there.
Hiya, I had jack and Jill involved with my daughter too, they did help sort out nurses to allow me to bring my dd hOme and then they did keep in touch with my hubby and I after she passed, they don’t provide counselling but give u info on Places that do, if u google Edwards syndrome Ireland I think the charity comes up and u could contact them from help, if I remember right the special care baby unit also had info leaflets on that charity?!
Your sister will Probably also b given the little lifetime boom with the nurses fill in, i know they done it for me with Morgans footprints and little piece of hair, they filled in her weight n length n stuff, it’s from isands which might b another good contact for u and ur sister….
Sending u all hugs n if I can help at all just pm me xx
Jack & Jill foundation get a lot of their funding from people sending in their old mobile phones. I’ve sent some phones to them in the past, just pop it in an envelope and write FREEPOST Jack & Jill foundation and it should get to them. Every little donation like that helps and what they do is so worthwhile. To have a nurse come and help the family when they are going through such an ordeal is a wonderful help.
Keeping you and your family in my thoughts. x
A similar situation occured in our family last year with a rare genetic disorder…sadly the baby died as it was being delivered.
The couple received extensive and on going counselling through the hospital and seem to have dealt with everything very well considering.
The mother spent a lot of time writing diarys etc and made these after the baby died in to a lovely photo book keepsake along side her scans and countless photos they took, she also kept and wrote down all the e mails and texts they got.
I took many photos of the baby once it had passed and they treasure these along side their own photographs. They spent 2 days in a private room recuperating and saying goodbye to their baby.
They are now expecting again and are due in September.
Sorry to hear about you sad news and I know the strength, kidness and love you have will be a great comfort and help to your sister. I have worked in the past with parents who find themselves in this very sad place. Your sister shouldcontact SOFT IRELAND on 1800 213 218. They offer great support. PM me if you want any other information
Thinking of you
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