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

He’s your newborn baby, of course you can share pictures of him. That doesn’t need to involve telling anyone the specifics of this medical condition, which I can understand you wanting to keep private. But there’s nothing shameful or distasteful about tubes and wires, they’re just a part of life for some people.

I did share photos of my baby hooked up to wires etc in nicu but that was because it was the one thing as his mum I had control over and only I was allowed to do. I hated that I couldn't spend all my time with him and that people could visit without me being there. I wouldn't have shared medical information that had the potential to be embarrassing for him later though. I shared what my son's medical condition was but only because it was very obvious if you looked at him anyway. It's less obvious now so I mainly leave it up to him who he tells.

You are 100% correct not to share any details that your future 15yo stroppy teenager (in 15 years time) will be furious with you for having told to Aunty May and your sisters and cousins. "Digestive system issues" is fine for a description.

If it's possible, I would carefully set things up to take a face photo with minimal wires visible (obviously not removing anything that's needed) - there's a lot that can be done with draping a bit of blanket in a way that doesn't look like it's hiding a monitor wire but is. You will want to have those photos yourself, even though it's distressing now how poorly your baby is, you will value having the photos to remind you and him of how strong you all were to get through this time.

We met our goddaughter when she was still covered in tubes and wires and in an incubator and too little to be touched and we really treasured those memories as she grew to the strong healthy adult she is today.

You could get physical copies of the photo printed and explain that you are only sharing it in printed from because you don't want the digital image online ever?

I don’t think it’s distasteful as such. My friend shares a picture of her little boy on life support frequently to show consequences of non vaccinations.

BUT it’s your baby and you should only share what you want with who you want.

Tell other people they can see pics when he’s out of hospital.

Probably not

This wasn’t an issue before social media. When DS was born over 20yrs ago we had a digital camera but no phone cameras, in fact a lot of the family didn’t have mobiles at that stage. So much easier to control.

DS was quite poorly for the first 48hrs, he was a month premature with severe jaundice that took about 10days to clear sufficiently to be discharged. He spent the time in NICU, initially with tubes all over the place then just an NG tube to help get food in quick if his glucose levels dropped rapidly. He was also naked most of the time to maximise the surface area for light therapy.

NICU staff encouraged us to take photos. He was low risk but there is always a chance complications can develop so having photos is good.

I think a few carefully curated shots to share with family and friends is fine. But widescrean shots of them attached to multiple machines may worry family who are not aware of his condition.

Are there any support groups online for his condition. It can be really helpful to chat with people who are going through or have gone through your situation.

Although it’s distressing at the moment as he grows up it is probably going to be important to be upfront if he is left with incontinence or prone to accidents. From experience, DS developed a type of childhood epilepsy, you don’t want your child to miss out in the future so you need to find a dialogue you can use if, for example they go on sleep overs or school trips. The sooner you normalise talking about it the better. You don’t have to shout it from the treetops but no one is going to judge the truth. They may come to the wrong conclusion if it’s clouded in mystery. You don’t have to go into graphic detail. Just tell them he’s having surgery on his bowel. Unl ss they are like me and have a medical background they won’t want to know about the nitty gritty.

At the moment it is fine to be private. Accept support during the surgery. But be aware that grandmas love changing nappies so preparing your DM and MIL may be your first challenge. Older generations are much more likely to be on the same page with regard to privacy.

"Lots of people are asking for photos."
Just because they ask doesn't mean you have to say yes.

Could you just tell them that you think they might find the presence of all the 'medical equipment' distressing, and for that reason you've decided not to share photos? Push the focus away from your baby and onto them? And just hold firmly to that, without discussing what the 'medical equipment' is.

Hello! Thank you all for your kind replies.
I take photos of my son daily but for my own memories. It is painful to see him like this but he is so precious and I don't want to miss his any bit of his development - his first month milestone will pass by like this but the photos will be for me. I am not in any way ashamed or embarrassed of his condition or of him and I didn't mean for it to come across like that. However, I pray he does grow to be a teenager, a young man, someone's boyfriend, an old man... Just to live a full life and I can imagine it isn't something he might appreciate a random relative dropping in conversation in front of any old person.

The condition could be resolved but also each developmental stage of his life will tell us more about whether it will be. He may be incontinent, he may not be, only time will tell.

And I have told my own mum for the support and also my sister. But I do wish I hadn't told my sister. She has a 7 month old boy and it (sadly for me) feels so raw when she shares photos of him as a newborn and says "how did he grow up so quick?" or doing all the normal mum things with her son which I know I won't be doing with mine (he is scheduled for a minimum of 3 operations in his first year). And I find it tricky to answer questions on my son's development from her after she's had a day with her son doing all his baby sensory things or trips to baby clubs. I know how unfair I am to feel like this, but I just feel complete grief at seeing a life that I thought I might have with my own son. And so I don't want to share anything with her at all anymore. Each question of hers to me feels like she's asking things so casually whereas each of these details feels so nerve wracking for me to learn from the doctors. She can't win either way with me, sadly. I don't know how I'm going to navigate our relationship going forwards. I of course am happy for her and her life and don't expect her to be devastated like I feel but at the same time I really am struggling to keep in touch with her in a genuine way.

I had one who had disability requiring surgical interventions and was in NICU for several months. I shared the same photos to the same people as I had done for their older siblings, just so happened theirs had lines and tubes. I was not going to hide them away and make them any less than their siblings because of their medical requirements. We also never felt ashamed of their issues, that’s easy to transfer to a child even if you don’t think you are doing it. They have grown up like that, so even now as an adult, are very open with all and sundry as to the problems associated with their disabilities/conditions, which they don’t have to be, their choice and they would not be wrong with whatever they chose in that respect.

ETA - social media didn’t really exist from memory when ours were young, so there was no sharing any photos to social media platforms. All of our sharing of photos to family and friends, for all our babies/kids, was via photos attached to emails. We were early adopters of digital camera, which were rare when we got our first just before our eldest was born. So, maybe that makes a difference without social media aspect????

My DD was in the hospital for 2 years when she was born for intestinal issues and cardiac issues she is now a pre teen still with a IV line and a NG tube. I take and share photos of her from the beginning like I would any of my other children. Her first photo is up in the hallway with her tubes in because it would be weird not to have her birth photo or any photo of her on show along side my others because she happened to have a feeding tube and an IV line.

Personally, if my child was critically ill then logging into social media would be the last thing on my mind.

NICU is a really hard place to be, so big hugs to you!
What you said about grief really resonates as I felt the same, it wasn't what I expected and for a long time I would get upset seeing other peoples newborn photos, first hold of baby etc. But you will still have a life with him, milestones etc its just different to what you expected.
I mean this really respectfully, but if you don't think your sister is purposefully trying to upset you then take a step back and consider how your current situation is affecting how you interpret things. Its quite understandable but try not to let it affect your relationship for life.
Have you confided in close friends for support? Or looked at support services? Looking back I should have done so as I'm sure the trauma really affected me at the time but if course I was so focused on baby that my own wellbeing was the last thing on my mind.
I'll be thinking of you 💙

Also to add - I didn't mean share on social media. I don't have a facebook. I meant I am getting lots of WhatsApp messages asking for photos.

ETA: for context more than anything. DS was all fine for the first 3 days of his life and no symptoms of anything and I remember seeing some messages for photos etc and feeling like I didn't want to share them. It just felt like a special private moment in that moment. And then the situation evolved to going to NICU. And things began to feel even more private. I suppose I am still processing things myself and not sure how much I want to talk about things just yet too. I didn't articulate this but for example, my brother is currently having a house move and is sharing swatches in a group chat and everyone is giving their opinion and I feel like my world is falling apart around me and here are the people closest to me talking about furniture. It makes me want to share even less with them. I know completely how unfair I sound but it's just how I'm feeling right this moment

I wouldn't post the pics or details to social media but, as a Mum who has a child who has had lifelong medical issues, you may find you have to find a way to explain this in future. You also have a right to support. If you make it known to your son that his condition is to be kept quiet and hidden, he may learn to be ashamed of it.

My child's condition meant that sometimes we were unreliable. I did lose friends over it but held others because they knew I wasn't opting out of visits arranged at the last minute for no good reason. This applied to their own friends too.

I'm not saying you have to sing it from the rooftops but people notice things and social management can mean having to give some sort of explanation. You don't have to consider this all now, just some food for thought. Just see what unfolds and what is right in future, and what is right for right now. Hopefully your son's condition will be resolved and it will be a non-issue.

It makes complete sense that you feel that way. When my son was in NICU I felt like the world changed entirely, and seeing the rest of the world carrying on as usual was such an odd feeling. My family wouldn't have been sending things about swatches at that time though, I guess they kept the random chit chat away from me or maybe I've just forgotten. You could mute chats that aren't helpful if it's a distraction at the moment. It's fine to keep things to yourself while you process, or maybe if you want to, speak to others in the hospital if there's a family space? The other parents who are there will in some ways understand, even if their child's medical situation is different. Some days I found it helpful and talked to people, other days I couldn't face it and just sat with my baby. Just do what feels right for you, there's no wrong answer I don't think.

No one has a ‘right’ to see pictures of your baby
you do what you think is best for you and him
you could share a couple to family and say they are not to go on FB at all - personal view only If you want to obviously

Share with those you’re comfortable sharing with and don’t share with the others.

I hope the surgery is straightforward and you get him home soon.

Of course any decision you make is totally up to you. I do think you need to be careful how you handle the issues he's going to face, with you keeping them secret he may feel ashamed and embarrassed more than is necessary.

You don't want your son's illness to be stigmatised either.

His health battles will involve all those nearest him - you, his grandparents etc all need to be knowledgable and supportive. They will love and treat him like he is fine, just as he is.
His normal should be known not kept a secret.

I strongly believe that you will require support yourselves, as parents, like most new parents.
What would happen to poor son if you were to have an accident?

Take a few more pictures focussing on sending them to others - so non confronting pictures mainly of the face. This is to save shock.
Gradually, as family understand your wee son's hurdles and illness, you can comfortably share more photos.

When she first became ill I shared some photos with immediate family, but not many on Facebook. She was a toddler though. The only ones on Facebook was the occasional photo of a hand, or a happy one on the day we found out she probably want going to die. Photos to family weren't 'look at my ill child' but 'here's something cute we managed today' and the wires were incidental.

There are many photos which I have never shown that are raw and painful to look at though.

She had a NG tube for quite a long time though and I didn't even think about those in photos, it was just part of her at that time.

It's entirely upto you what you share, but I don't think there's anything wrong with sharing pictures of your beautiful baby with your family. He's their grandchild, nephew etc. I personally think it would be a shame for them not to see any photos of his first month because you're self conscious about the pictures. But if that's how you feel, than that's your call as you've got more than enough on your plate.

It's hard seeing life go on for other people whilst you are going through hell.

You'll get to that petting farm with your baby that you're sister went to. You'll get those precious times. At the moment this is all encompassing, but there'll be a time when it falls into the background, even if it still is a daily issue. It won't always feel like this.

@dodomin Yanbu to decide who you want to share photos with. Just reading your last post though I am wondering if a bit of baby blues is hitting with you isolating yourself from your family more and more.
I absolutely understand it feels odd as their lives are continuing with day to day stuff, but yours has, well, stood still.
I had a baby in NICU as she was born prem at 31 weeks, but she wasn't as poorly as yours is. I also had two older children at home so was very split. When I was home I wanted to be in NICU but when in NICU I wanted to be with my other two.
I also wonder, as you've not told them about all that is happening that they don't realise how poorly he is, and think it's more just getting stronger before he can come home. I wonder if setting up another WhatsApp group, just for chat about your ds. Explain what it's for and maybe ask for general chit chat to still go on in the other group. That way you can mute the other one if it feels too much for you.
I hope he continues yo improve & the operations are successful 💐

OP, congratulations on the birth of your darling boy.

It’s so hard. From the minute you announce your pregnancy you are treated as if you are communal property, everyone touching your bump, expecting to give opinions on names, constant messages ‘have you had it yet / are you in labour “ etc. Then expectations that you will discuss intimate details that you would never be expected to discuss in any other context … labour , stitches (nope, sorry, not discussing the state of my vagina, thank you) and so it goes on.

And when something extra sensitive happens you just don’t want to discuss it with people who are not going through it. They are the ‘wrong audience’. They are not going through what you are going through.

And you are bring ethical: your child has a right to medical privacy.

I had a Dc born with a difference, who had 4 surgeries before their first birthday. I was so upset, o thought it would stop them in their tracks… but no, they were delightful and developed full steam ahead in their own way.

I would say “a few issues with his digestive system requiring some surgery. All under control but I don’t really want to go into it all atm”.

Good luck OP. Is there a support organisation of parents with children with similar conditions?

I would not post any photos of him on social media. You are absolutely right to protect his privacy.

You could maybe post a little hand with his wristband on or a balloon or toy and say he’s starting to feel better or he’s having a few early struggles but making good progress.

you sound like a fab Mum and a great advocate for him.

Hi OP, my son was also born with an anal-rectal malformation and was in NICU for a little while after birth. It’s really hard and you’re doing a great job getting through it all. Please PM me if you need to talk.

I didn’t share picture on social media as I wouldn’t have anyway, but one of the NICU nurses gave me a photo she has taken of me holding my son (tubes and all) and I immediately came home and framed it. It’s still on our windowsill. It’s so hard coming home from hospital without your baby and it was importwnt for me to make him feel real and a part of the family somehow. There’s no right or wrong answers here, you’ve just got to do what works for you.

Just do what’s right for you.

I shared pictures of my baby with tubes when they were in NICU because the tubes only came out when life support was removed and they died. As a result, I feel far happier with the pictures with the tubes than I do without.