Not wanting to talk about LO's operation

[SazMcStan]

I found out last week that my son who is 8 weeks old has to have an operation next year. His bones in his skull have fused together too early and they need to perform surgery on his head to fix this. That is basically all we know for now, we have to go back in a couple of months to speak to a team of specialists when we'll find out more. The consultant we spoke to said she didn't want to give us all the information on it at this time because it's a lot to take in and it's best to wait until we've had a chance to talk to everyone involved rather than take all the literature and scare ourselves silly before we have a chance to speak to specialists.

So my OH and I have told our families what is going on and what is going to happen. We've also said that we're not worrying too much now because we don't even know what to worry about and like the consultant suggested we're waiting to speak to all the specialists. I have asked that they wait too before researching things and we've told them everything we know on the matter for now.

I love my family and my in-laws and know they're going to be a great help and give us all the support we need. I know how much they care about the baby and that they will also be worried about him and what he has to go through. But they're really stressing me out over this and seem unable to respect that we don't want to talk about it for now and that we don't have any more information.

My sister has gone on to research the risks of surgery on his head and has told me how dangerous it is and suggested I get a second opinion. She also thinks that I should wait and see if the problem fixes itself and if by the time he's two maybe consider alternatives to surgery if not.

My sister in law is constantly texting asking how he is, asking to see photos of his head and asking the same questions that I still don't know the answer to.

My mum has cried every time I've spoken to her. Despite me not bringing it up she is going out of her way to and then getting herself worked up. I got my hair cut the other day and she burst in to tears because they're going to have to shave the baby's hair in a year and a half.

My dad has been ok, he just told me that his colleagues baby had something similar and he just found a way to style her hair so that you couldn't see the huge scars all over her head. Apparently you can only tell when her hair is wet or if it's a windy day.

Last night over dinner, after a long day of repeating myself, my mother in law brought it up saying that she has looked it up online and doesn't think my LO has this condition and it's probably this other thing that she's found which can't be fixed but it's better than having surgery.

I was hardly rude, just very blunt and just said that I know everyone is worrying and that they all have questions and things they need to find out but we've told them everything we know and that we have asked everyone to wait and see what is said when we next go to hospital. I then said that if anyone brings it up again, after being asked countless times over the past week to not, then I'll either hang up the phone or just leave the room. I'm not withholding any information, I am not in denial, I am not worrying about it right now and I am not willing to talk about it anymore until there is something more to actually talk about.

At this she started crying and left the table. FIL went to check on her and said it was best to leave her and not to go and apologise. Which I told him I had no intention of doing. We left shortly after. OH has said he's on my side with it and will talk to his mum today.

Am I being unreasonable to not want to talk about it anymore?

(Sorry for the super long post!)

YANBU - they should be supporting you, and not going on and on about it, especially considering you have a gorgeous newborn, and its a very emotional time.

Good luck though - and fwiw, my colleagues little girl had the same condition, had it operated on at GOSH at 18 months, and you would never know - her scar runs from ear to ear and you could only see if with her hair a certain way.

Of course YANBU, you need to deal with it in whatever way works for you. They aren't either though in wanting to talk about it. It must be worrying for all of you, and of course people will get emotional about it.

You know you have to be very firm because these people (who are understandably concerned) are going to make things much more stressful for you, and you and your DH need to protect yourselves.

I would nominate one person to whom you pass on information - your mum or your sister maybe. Then that person can pass on the info to everyone else, they can discuss it amongst themselves as much as they like, but your discussions are only going to be with medical professional, and your decisions will be made in consultation with them and not anyone else. When you make decisions these will be passed on.

It may sound a bit dictatorial, but I've had cancer, and have friends who have had cancer/have sick children and this is what is recommended, You cannot be dealing with other peoples anxieties, it is enormously energy draining and stressful, and it is selfish of them to expect you to. Their job is to make life easier for you, by offering to babysit so you can have night out or whatever, not weep all over you. Save your energy for yourselves and your DS.

No. YADNBU
I'd be bloody minded and get laminated cards to whip out whenever you are asked.
You know as much as we do.
I/ we dont want to talk about it.
Please change the subject.
Shut the fuck up.
Your constant questioning is causing us/ me distress.
Leave me the fuck alone.

YADNBU. It fucks me off royally when people do this. You are the mum in this situation, you are the one who they should be supporting and they should be taking their cues from you. They are understandably worried but it is not acceptable for them to be ignoring your wishes and badgering you for information. My family are very similar - they railroad into things and make it all about them, then have crying fits when their "concern" (ie rude annoying questions, coupled with unwanted "help") is rebuffed. It's best to set boundaries now and you were totally right to be clear on what you wanted. I have had to actually scream in my dad's face in the past to get him to hear that I didn't want more advice or questions. He did listen, briefly, but he is unable to engage with someone properly - he just focuses entirely on what he wants and thinks. It is very disappointing when someone is like that - they tend to be more of a drain than a support.

I hope everything goes well for your little one

Bloody hell OP, this must be really hard.
As you know they mean well and probably don't realise they are doing it, or that they are not the only person doing it - each individual family member doing it repeatedly must be driving you mad.
YANBU in the slightest. I think you have every right to change the subject/hang up the phone/leave the room when it's brought up. As much as they all love him he's your son, they need to be supporting you and your OH first and foremost. I think your attitude is right about it though and it's great you are trying to stay calm. You are doing the best for him.
I hope your little boy is ok

YANBU

I hate the way people become medical experts via flipping Google. I'm the same as you, I don't like to go over and over things that are worrying me.

Ona positive note, I have a colleague who's daughter had the same condition. They went downthe surgery route and LO is doing very well. ??

My nephew had this done at gosh when he was 6 mths old. You would never know anything about it now. I love it when "lay-people " google things and come up with another diagnosis.
I'm sure they have only good intentions but YANBU !! Just keep repeating" is rather. Not talk about it at the
Moment. "

Thanks everyone. I just needed a bit of reassurance, I know their all doing it because they are worried and care about him but it is driving me crazy.

I like the idea of having flash cards ladymalfoy they will come in handy for the future I'm sure!

I think the hospital are going to put me in touch with parents who have already been through this so hopefully their DC's scars will be like that too CMOT

That's a good idea Kurri I might have to introduce that soon. I'm happy to talk to everyone about it when there is something more to say than his head is weird and he needs an operation!

I've not heard from anyone today apart from my brother in law who has very nicely text to ask how 'that funny shaped headed boy' of mine is today. That definitely cheered me up! I'm waiting to speak to OH when he's on his break to hear what his mum had to say...

YANBU

Of course they're worried, but the last thing you need is to be bombarded with nonsense courtesy of Dr Google. You are doing the right thing, which is trusting the diagnosis of actual doctors.

I really hope your little boy's surgery goes well, when it happens.

YANBU

OP - This brings back so many memories.

I'm assuming your DC has craniosyanostosis. My DS had it too - they found something amis at day 2, by week 6 we were reffered to specialists and by week 10 we had the diagnosis. DS had his operation at just over a year old.

YANBU regarding your family. However - they are only worrying because they love DC too and they want to understand/ know more. Problem is you don['t yet uderstand and know more, and really telling them you don't know and to please not bring it up is fine.

What hospital are you at? Have you seen a specialist?

I'm more than happy to talk to you about my experience - just DM me. Just to reassure you - DS is a very healthy, happy 4 yr old, and you wouldn't know that he ever had a problem. He has a scar but you can't see it under his hair. And althought we still see specialists at regular intervals there are no concerns or poblems anymore.

Jesus they all need to get a grip. My DD has a very serious heart condition and family and friends rarely mention it unless we do. The only way I've been able to deal with it is to compartmentalise it. I try to only think about it at each consultant appointment. I would have gone mad with anxiety over the last 13 years!

Good luck. Hope the op goes well.

Dd had some health problems when she was tiny, her hips were a concernce for a long time and we had rollercoster of a time waiting to find out about a potential heart condition. By far the most stressful thing was dealing with other people; dh and I were worried enough for everyone and didn't know anything with any certainty to discuss with others.

My ils, mil and gmil mostly, were awful for this. They altinanted between telling us there was nothing wrong with her and that we were making a fuss about nothing. Then telling us has terriable it was for THEM to have to deal with dd having a problem like this. We got tears, amiture dr google, demands to speak to consultants and lots more stress.

In the end we just stopped giving them any information on the topic. There is one very lovely children's health nurse at our hospital who advised us just to tell people who needed to know about dd's health problems and tell everyone else we were respecting her privacy. So the nursery she was going to attend were informed as they'd have sole charge of her and the ladies who ran the church drop in under 5s sessions. It was much nicer to focus on the postives dd was acheiving rather than constantly hash over the negitives we could do nothing about.

Be kind to yourself. While everyone else of course loves and worries about your dc. You and dh are the ones who have responsability for making decisions and your feelings matter above everyone elses. If they can't respect your reasonable request to not disscuss it I'd leave them out of future disscisions. Talk to people who will be reassuring, don't make it harder on yourselves.

Yanbu at all. Extended family should respect how you and your DH are handling this. They may be worried but it's not fair for them to unload that worry on you or your DH. My DD needed an operation at 6 months so I have a bit of an inkling what you're going through. I hope you are getting the support you require from somewhere.

When DD was in the hospital just one of my ILs came to see her and all I remember is the person going on about this wonderful Christmas present she and her brother had sorted for their kids.

Yanbu.

unfortunately this is where you fund out if you can actually rely on your family or if it suddenly becomes all about them and how they feel. Leaving you with the exceptional stress of having to cope with a lo needing surgery and an extended family who need support.

What you imagine us that they will rally round and be supportive unfortunately as you're finding out that doesn't always happen.
my own tale is that my parents made great noises about novenas and praying at church but engineered an argument on the day d's was going into surgery then didn't speak to me for a week after. It was very dtressful for them apperently.He was 3 months.
The 2nd set was spinal surgery and if I heard once about a kids with holes in the heart who may never walk I heard it a thousand times. In laws asked after his survey Once. 6 yrs later. We aren't nc or even lc!
concentrate on finding your inner strength and try to mentally filter them all out .

Surgery -autocorrect again

YANBU. My nearly 2 year old was born with a cleft lip, palate and hydrocephalus which has meant 7 operations so far, one scheduled for next week and more in the future. We've been doing similar to you, trying not to think about it all the time, just when we need to but like you when I was pregnant and when he was still tiny there were lots of crying and stupid comments from various people. In the end I put a general announcement on facebook saying that we didn't have a date for his first operation yet, we would let everyone know when we did and in the meantime we would be enjoying our new baby and trying not to think about any operations.

Now when we get a date for an operation I put something like this on facebook "We have a date for E's next operation. He is having grommets put in on X date. All prayers, good luck and finger crossing much appreciated as always". Then when we are home I put up "E is home and recovering well, thankyou very much for the support". It sounds a bit pompous but these days we only get stupid comments from people who don't use facebook.

YANBU.

If it helps I also know two people who have had this surgery done. One is 30 years old and you'd never ever know he had any scars or anything. He's also super bright, MBA educated and CEO of a startup!
The other is still a child but doing really well too.

Christ no yanbu. I'm amazed you've had the restraint not to scream at them all to fuck off long before now.

They need to see this, about circles of support. The premise being that you only give support to those closer to the centre of the circle than you and only ask for support from those further out of the circle. This is taken from kate gross's blog (a young lady who recently died of cancer) but it's applicable to any stressful condition. Substitute your names and send it to all your family. Tell them expressly that the support you need is NOT to talk about it at all unless instigated by you. And totally with you that if they ignore this remove yourself. Good luck.

using facebook or a blog is a good move, you can then say "we will be putting updates on our blog/facebook, email me for the link"

then you can put up the information you want/need to share.

and keep the wails and suggestions online, tell them you want to focus on in real life on your baby's life and having fun.

your baby doesnt know any different - he just needs people to love him and be happy around him

YADNBU!

My DD (5 yrs old) is disabled, and to date has had 6 surgeries. It took my mum over a year before she stopped crying whenever she saw my DD!

I absolutely hate it when friends / family members either try to self diagnose her or come out with "my friend's, DD, BF once knew someone who had..." so instantly think they're suddenly more of an authority on the subject than the Consultant who has spent their life specialising in the subject

So many great replies, thank you so much! MIL has been in touch to say she is just trying to find things out to put us at ease, so I have politely replied thanking her but saying I'd rather be told by someone who specialises in this rather than a website.

giantpurplepeopleeater I'm glad that your DS has recovered so well. That is the diagnosis that we've had. Thank you for the kind offer, I would love to find out a bit more about it so will be in touch.

There seems to be a lot of MNers who have been through or are going through a similar thing to me, I'm newish to the site so not sure if something already exists but could we perhaps set up some sort of support group or thread to help each other out? Just for if we need to have a rant, need reassurance or tell everyone how great their LO's are doing?

It's great to have family close when things like this happen, even if they are a pain! But for those who perhaps haven't got that type of support, from what I've seen the lovely mums on here are the next best thing. So many positive, helpful and kind comments! Thank you everyone!