To ask if you would share a photo of your unwell newborn with lots of tubes and wires

[dodomin]

Background:
Our wonderful DS has been diagnosed with a rare ano-rectal condition - because of the nature of the illness DH and I have chosen not to share what is wrong with him with friends and family. Surgery should resolve it (but also it may be a lifelong issue he has to live with). And so if he wants to share it when he is older than is no problem, but given how intimate/sensitive the issue is DH and I feel like we should protect his medical issues from everyone we know for now. For example, both DH and I feel like if this was something that happened to us and we had lifelong ano-rectal issues, we wouldn't want everyone to know about it and ask us about it..

Where he's been in hospital for the last few weeks now, naturally we've had lots of questions as to why he isn't home yet. We've told a half truth in that he's just having some digestion issues. Lots of people are asking for photos. He is heavily cannulated, has an NG and long line. I don't mind sharing photos with some people, but not all.. is it distasteful to share photos of him like this?
YABU - you shouldn't share such sensitive photos with any old relative or acquaintance
YANBU - it's fine, share the photo

I would do exactly what you are doing.
I hope this awful ordeal is over soon and you can enjoy your lovely little boy. His privacy is important, even this young, good on you x

My DS was in NICU I didnt share them.

I actually still find look at the pictures distressing as it was such an awful time. Ds is 2 now.

I shared a few photos with my closest people (showing as little as possible of the medical stuff). Nothing with anyone more distant. If I was doing it again, I probably wouldn't share as it really distressed my mum.

I honestly judge people who post pictures of their children in hospital on social media. Intrusive, tacky and mawkish. I don’t know what possesses people to do this. So I am completely with you.

I might tell trusted friends about the condition but I completely respect that you choose not to.

We did with dd, 11 weeks prem. But only with very close friends and family. I found it very hard dealing with the "how lovely, congratulations" messages whilst in such emotional turmoil and it helped that our support network were aware of how serious things were without actually having to say to each of them. A picture is worth a thousand words. But it's a really personal decision and it's for you to do what you feel comfortable with.

This says a lot about you, and none of it is good.

It is fine to choose not to share photos, obviously.

But judging people for how they seek support and reach out, when they have a sick child? That's something you should really question yourself about.

It may be just 'social media' to you, but to some people, that's how they can snatch five minutes from watching over their child to update family and friends.

My DD was nothing like as ill as the OP's child when she was born, but when she got her first drink of colostrum through a feeding tube I wasso proud of her and I absolutely wanted to share that picture - I didn't possibly have time to send it to multiple anxious family and friends who I knew were worrying about us, and the comments on it gave me a much-needed lift when things felt very, very grim.

I wouldn't, his medical records are his and should not be shared.

I've never put any photos of my children on social media, I believe everyone has a right to privacy.

It’s your child’s private medical information you are sharing, I think it’s a really difficult time for you as parents and you need support, but if you were living with the knowledge that all your mum and dad’s friends knew all the ins and outs of your private medical history from your childhood and still have photos of it, I don’t know if I’d be comfortable with that.
I can see why it’s a dilemma what to share and who with. You’ve got a lot to deal with atm maybe leave it for now until you decide one way or another, there’s no rush.

Do what feels right to you- there isn't a correct answer on this one. It sounds like you don't want to share your pictures and you should just ignore the pestering.

Having a baby in NICU is an enormously difficult time. I have photos I took during that period because I thought my baby was going to die and I might otherwise not have any. As she got better, I also took them to share as part of her story with her, when she is older.

I shared them with my sister and no-one else. My parents had a premature baby who didn't survive and I was worried that my photos might be incredibly triggering for them. So this is another consideration with posting such photos on social media - you may be bringing something back for others who then see them.

I think if you don’t feel close enough to somebody to want to tell them the full details of his condition (i.e. they’re not part of your close support network) then I wouldn’t share.

Our son was in hospital for 101 days after he was born and we only shared pictures with our parents and siblings.

It’s partly a question of his dignity. If you or even an older children were really unwell, nobody would think it reasonable to share photos of you looking obviously poorly. The fact he’s a baby and can’t express his own views about it makes it even more important for you to err on the side of caution in my view.

Very best wishes to all of you, NICU is really hard but it doesn’t last forever!

I would certainly tell my parents and siblings! As for photos I would share if you can without obvious tubes but it’s not distasteful at all if you can’t. If people are too insistent shut them up by saying your child has some health issues and it’s upsetting to talk about. (My DD was in NICU for several days but it did resolve but we put off sharing photos til she was home. No one pushed).

It's life. Let everyone know what a wee trooper he is and get more understanding and support for him in the future if required and yourselves. Don't hide him it'll do no harm and maybe help others too

You could take a close up of his face, or cover him with a blanket, or even photoshop out any intrusive wires and so on. Or you could say that you won't be sharing photos until he's out of hospital. People don't have a right to see photos until you are ready.
Do hope your boy makes a good recovery from his treatment.

It’s up to you.

I agree with your reasons and think that you can share as much or as little as you are comfortable with. You don’t owe anyone photos or updates.

I think you should do whatever you feel is right for you and your family.

It's a tough time. Hopefully, people are being kind.

Telling friends and family means you will have their support an not telling anyone means you can’t discuss things when you need some support

im a maternity practitioner and have looked after several babies with ng tubes - including a little one who now is my god daughter

pics are up to you but nothing wrong or shameful. A baby with a ng tube and cannulas

No, I wouldn’t share it. Why do they need to see a picture of your son in hospital? It’s not like he’s on holiday.

You’ve made the right decision in not sharing the photograph (except to the select few).

Wishing your son all the best and hugs to you and your dh as I know it’s not easy to have a child in hospital.

I doubt I’d be taking pictures let alone sharing them.

My DD was born 8 weeks early and had NG tube and canula etc. This was a while ago before I had a social media account but I don't think i would have posted photos. I remember giving each granny a photo of her when she was a week or two old. Neither of them put them on display. My mum lost a baby at 4 weeks old and about the same time of year as DD was born. Looking back now I think she probably found it upsetting.

I have photos and film of DD during the 8 weeks that she was in SCBU. To be honest, I still find them a bit upsetting even after all this time.

The most important thing, however, is to do what feels right to you. You dont have to share his medical details with anyone either unless you want to.

Sending unmumsnetty hugs and hoping the your LO does well and gets home ASAP.

Ps You might find the BLISS website and support services helpful if you haven't come across them yet.

I think you are doing the right thing in respecting your childs privacy, although I do think it's okay to discuss with a couple of very well trusted people as you may need support as well. Our son was very premature, and spent time in NICU which we didn't announce his birth until he was home, only told our family and a couple of very close friends. I took photos of him in NICU with CPAP/high flow oxygen NG, IVs etc, but they are private and we did not send or share them. My family are respectful so they have seen the photos in person but my ILs are very prone to over sharing, so we didn't send them any photos because we knew that they would be sent to others who we would never choose to share with and we weren't comfortable with that.
I hope all goes well with your baby x

1981 prem baby survivor, should have been born into 1982 yep somehow I survived to tell the tale.
I have some Polaroids my parents decided should never be made public.

God bless them.

But I’ve personally willed new babies born too early to survive.

When my dd was in a similar situation some years back and I needed support I did share a photo of her because I couldn't find the words to say what was happening.

I only share photos of my kids with a very limited number of trustworthy people who don't do social media though, and that remains true to this day. I don't think there's anything wrong with that if it's what feels right to you, not sharing is equally valid as well.

I hope the coming weeks and months are as easy on you all as they can possibly be 💐

It doesn't matter whether we would or not. It's your business.

Just tell people he's in NICU, he's doing alright and youll show photos when he's home.

It's not embarrassing to have a baby in hospital or anything.

It’s your personal preference. Someone on my Facebook had a baby a few years ago who was born with his intensities on the outside of his body and she posted a picture of him because she wanted to share that he had been born and was fighting and doing well. He had an operation and is about 5 now and thriving. I’ve not judged her for sharing his photo and wouldn’t judge if she chose not to either. Her profile is set to private so only her friends on Facebook could see the photos.

I'm not sure if that meant to sound as judgy as it did, but I took pictures of my son like any parent would with their newborn! Especially as we didn't know if he would come through.
We sat by him for hours and hours, unable to hold him etc. So please don't think it is blase to take pictures.