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Original poster

How do I tell our 4 yr old dd that her new baby brother is dying in hospital

107 replies

dcb · 23/06/2010 21:48

Won't go into details but our son had oxygen starvation at some point leading up to his birth (born 11 days ago). We extubated him on Sunday and he's been treated palliatively as he's not expected to survive. She said goodbye to him the day before as we didn't think he would breathe for long on his own. However, 3 days later he's still with us and we are at the hospital (one of us) all the time, taking it in turns. I've tried to explain he isn't going to wake up and will eventually not be here any more. She asked me today where he will be going and I think I mumbled something about going up to the stars (we're not religious). How can I explain it to her? I've mentioned dying but I'm not sure if she really understands what that is. Are there any books that I could use? I don't want to make a hash of it, as we would like her to remember in a good way - she was able to come in to see him several times and do hand/foot prints with him amongst other things. Thanks

OP posts:
MumInBeds · 23/06/2010 22:27

Other people have given much better advice than I could but I'm so sorry about your son.

wannaBe · 23/06/2010 22:27

am so sorry you're going through this.

I agree that it's best to be honest.

But I also think that perhaps you ought to talk about how "baby is very very poorly and we don't think that he'll be able to get better. And if that happens we will all be very sad but we loved him very much and mummy and daddy love you very much.."

I say "we don't think he will" rather than "he is going to die" because although you know this is the probable outcome, your ds has already survived past your expectations and nothing is certain until it is certain iyswim.

Forgive me if this is insensitive, but given your baby has held on longer than the hospital were expecting, is there nothing more the doctors can do?

I ask only because there are mumsnetters who have been told the same and whose dc have pulled through despite the gloomiest predictions.

Wishing you and your family strength for what ever lies ahead for you xx

MavisEnderby · 23/06/2010 22:31

www.Winston'swish.org.uk

Sakura · 23/06/2010 22:40

I just wanted to offer support, and say that you sound so strong
xx

Original poster
dcb · 23/06/2010 22:40

Thanks WannaBe, but he will be so impaired that we believe his life will be very short even if we could push him through this point in time. It may seem heartless and I would love nothing more than to bring him home for as long as poss, but we feel that we would only be doing this to ease our pain now, and would have to face it again in the near future, with all the implications that has for our daughter. We don't want him to suffer anymore now. The rest of him is healthy - just his brain so severely injured.

Thanks for all your links - will have a look x

I don't think it's really sunk in yet

OP posts:
MmeLindt · 23/06/2010 22:45

dcb
I posted on your other thread a few days ago. I am so sorry that things are looking so bleak for your baby, I was so hoping that he would pull through. No advice, just lots of sympathy. Take care of yourself.

thisisyesterday · 23/06/2010 22:47

i'm so, so sorry dcb this is one of the saddest things i've ever read.

I'd agree with not really talking about him going to die. small children find it hard to think about things happening in the future, esp with no set date etc
so it might be best to just say he's very, very poorly and just take it a day at a time. She'll be able to process things as they happen and won't be worrying about where he is going or what might happen next

I think, being non-religious myself I would explain dying as like being asleep, only you don't wake up or something along those lines

He sounds like a real little fighter to have come this far, and I'm glad you've been able to have some special moments with him and your dd even though his life will only be short.

wishing you and your family all the love and strength you need to get through this, it must be so terribly hard for you

Aitch · 23/06/2010 22:49

dcb i am so sorry, this is awful, your poor, lovely wee boy. peace and strength to you and your family.

SE13Mummy · 23/06/2010 22:50

Am so sorry to hear about your little boy. The best book I know is Goodbye Mog by Judith Kerr... the illustrations are particularly good at showing how someone's presence can be felt even if they are not physically there.

I've not been through what you're experiencing but I'm a teacher and have taught in two schools where 6-year-old pupils have died (one suddenly, during the holidays, the other from cancer). One of the key things I learnt from that is that the younger children often found it hard to understand that death was permanent. One of the Reception children asked, "what, is X dead for ever?". Your DD may need help with that but equally young children often have their own ideas about what happens to people when they die and sometimes it's easier to go with a, "where do you think X will go when he dies?" approach and follow her lead.

Take care.

BitterAndTwistedChoreDodger · 23/06/2010 22:50

I'm so sorry, I have nothing to add except you and your family are in my prayers.

(I really hope that doesn't offend you)

moaningminniewhingesagain · 23/06/2010 22:51

I am so sorry dcb, thinking of you.

biglips · 23/06/2010 22:51

im so sorry to hear

andiem · 23/06/2010 22:53

Dcb so sorry to see this thread. I work in a children's hospice and we always advise being honest
I know you said you don't want to bring him home but have you thought of a children's hospice if you wanted you would all be able to stay as a family with him if he was transferred to one
Obviously I don't know your individual circumstances but we often take little ones
So sorry for you x

bibbitybobbityhat · 23/06/2010 22:53

Mavis Enderby asked if someone could re-post a link to Winstons Wish.

gigglewitch · 23/06/2010 22:57

so sad for you all

Came to help mavisenderby out with the link to
Winston's Wish

thegrowlygus · 23/06/2010 22:58

Sands do a pre-school book called "a star for bobby". It is very good.

star for bobby

So sorry to hear about your little one - Sands are also fantastic support for you too. x

BodyMashIndex · 23/06/2010 23:00

So, so sorry for your loss.

I was going to suggest SANDS, but someone has I think.

Deemented · 23/06/2010 23:05

Oh dcb, i am so sorry that you are having to face this. My thoughts are with you.

A really good book to help your daughter make sense of it all is this, called 'When Dinosaurs Die' by Laurie Kransy Brown. It deals with death and what happens when a person dies is a way that young children can really understand. It also has a page which shows some baby dinosaurs in incubators and says something along the lines of 'Even people who have just been born can sometimes die'. I found it really helpful in explaining my sons death to his twin.

MissM · 23/06/2010 23:10

dcb I'm so sorry to hear your sad news about your little boy. When my brother died my DD was 2.5 and I explained (and still do now) that he had died which meant he wasn't coming back, but I believed that he was in the trees and the clouds and the sky. Whenever it's a beautiful day, or the wind rustles the leaves, or the clouds look particularly beautiful I tell her that it makes me think of him being in those things.

I found a book in the library called (I think) 'Goodbye Mousie'. It was absolutely spot on (although it does talk about the reason for the mouse dying being that he was old - my brother wasn't). I'd really recommend it. I found it impossible to find stories about young people or children who have died but Im' sure the organisations people have recommended could help with that.

I wish you and your family lots of strength and love over what will be a very tough time for you.

lisad123wantsherquoteinDM · 23/06/2010 23:10

trust yourself, you love her and him and therfore whatever you say will be the right thing.
thinking of youx

bethylou · 23/06/2010 23:11

So sorry that you are having to face this situation with your darling boy. As a teacher, I have often been surprised by how matter of fact young children are when someone is ill or dies. She may ask questions that will surprise you and she may cope extraordinarily well. I hope the links on here can help as and when you need them.

Mouseface · 23/06/2010 23:13

dcb

I am so so sorry that you are going through this.

DS has been in PICU on life support 3 times within his first year and DD, 11, saw him each and every time. We were very honest but basic with her......I know she is older that your DD but children except the facts surprisingly well.

It is very black and white to them and you'll be surprised at just how well she will take the truth. Plus, you won't regret not 'telling' her years to come.

She may ask 'why' alot and wonder why you are just so devastated and she may well try to comfort you, catch your tears and make it all better.

Younger children can be very sweet and supportive in an almost role reversal way in times of crisis and despair.

Sending love and strength to you all xx

I never forget just how very, very lucky we are.

NickOfTime · 23/06/2010 23:18

so sorry.
another vote for sands and winston's wish.

we only ever spoke in terms of 'very poorly' with older siblings as ds1 and dd1 were very little when we were in a similar situation.

sending you prayers and strength to cope whatever the outcome. x

peterpansmum · 23/06/2010 23:20

Dcb I'm so sorry for you and your wee lad.

My two year old son died very suddenly and unexpectedly last year and his older brother was four and a half at that time. In our experience DS1 was old enough to understand how permanent his wee brother's death is. We talked to him as honestly as we could, have answered questions in language he can understand but not given him too much info to digest all at once. Totally agree with recommendation for winston's wish - i have called them a few times and each time received very useful, practical advice for whatever issue i was struggling with at that time. The day DS2 died we told DS1 that DS2's heart had stopped beating and he had stopped breathing and he had been so poorly that the doctors were unable to keep him alive. In my experience i wouldn't say that he's gone to sleep as i've read that can give children fears of themselves or their surviving loved ones dying when they go to sleep. Being led by the child is very good advice and in my opinion so is asking them what they think (as i often do when i'm stuck for answers) as you may be surprised by their answers. Drawing pictures is a good way to let kids of that age express themselves.

I've used many books 'No matter what' has already been mentioned, 'sad isn't bad' was also useful as was another one called 'a first look at death' - DS1 was unable to read when his wee brother died so i was able to use the pictures and tell my own story to fit e.g omitting anything that referred to blame, etc as these books sometimes do.

Love, strength and hugs to you xxxx

bundle · 23/06/2010 23:21

dcb

I know psychologists are often sited in PICUs to support all the family - not just the patient but parents and siblings too

as well as the good advice on here, maybe you could ask to see a psychologist to help support you and your daughter during this very difficult time, x