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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

To not want to divulge toddler's diagnosis to anyone

95 replies

cloudyworld · 09/08/2024 19:52

My toddler has been diagnosed with Kawasaki disease. It means she has a high risk factor for getting heart disease (no matter how old she is) and so we need to be as healthy as possible from now onwards.

I have an absolutely huge extended family where we all see each other very regularly. The past couple of weeks DC has been in hospital and has been given drugs that have suppressed her immune system. We've been advised to be careful that she doesn't catch anything over the next couple of months. I have family who want to visit us. For now I can say she's a bit poorly still, but how do I fend off people for two whole months? I don't want to say anything that might be obvious that she has been treated for something other than a bad infection. We have doctors in the family too, so I don't want it to seen like I'm covering something up in case they think we're hiding something major about DC.

OP posts:

DeathByResponsibilities · 09/08/2024 19:54

What is the reason for not wanting to share her condition with the family?

I can't imagine how that isn't just seeing yourself up for a lifetime of making excuses and misunderstandings.

I can see why you would want to manage their reactions, perhaps telling people what kind of response to the information you would appreciate / not appreciate...

JulietSierra · 09/08/2024 19:54

Obviously she’s your child so it’s entirely up to you what information you divulge about her illness.
Personally I can’t imagine going through this without the support of people who love and care for us but obviously every family is different.
I wish your daughter all the best, this must have been very scary for you.

Abigaillovesholidays · 09/08/2024 19:55

Why is it you don't want your family to know the diagnosis?

EnjoyingTheSilence · 09/08/2024 19:55

Why don’t you want them to know? If they know she has something serious, they are more likely to be careful around her

Durdledore · 09/08/2024 19:56

It’s going to be tricky not to divulge isn’t it? Huge extended family, people wanting to visit, GPs in the family.

I would think about what message being circumspect about her illness sends your child as she grows up. Better to be robust and factual so she grows up feeling like it is what it is.

Feeltoooldtostudybutdoingitanyway · 09/08/2024 19:57

My nephew had kawasaki disease, luckily his was caught earlier enough that he didn't get any heart complications- but I can't imagine not being able to help out at the time. So I'm struggling to see why you wouldn't want family to know?

MintTwirl · 09/08/2024 19:57

I think if you are a family who you in regular contact then it is better to be open(unless there is a huge backstory). Your child will know and it would be unfair to tell them to keep this a secret

Simonjt · 09/08/2024 19:57

You’ll be aware that there is thought there could be a genetic cause, so her blood relatives have a higher chance of having it too, so family knowing could be very important.

Pinkypinkyplonk · 09/08/2024 19:58

I would just tell them, it will make your life easier in the long run. Everyone will just get used to it, and learn to live with it.

Pieandchips999 · 09/08/2024 19:58

Would you be comfortable saying you can't do it due to health or that she has a lowered immune system at the moment? You don't have to share more than that and if the Drs in the family as you could say it's personal information you don't want to share yet. Have you been offered any further support to help you think this through? Are you planning to keep the diagnosis private permanently or until you processed it.

PotteringAlonggotkickedoutandhadtoreregister · 09/08/2024 20:00

I don't want it to seen like I'm covering something up in case they think we're hiding something major about DC.

but you are! Why not just tell them?

Debs2024 · 09/08/2024 20:02

No it’s your business Just at boundaries saying she is not able to attend any events where she may be able to be infected at this time

Debs2024 · 09/08/2024 20:04

Set

Theothername · 09/08/2024 20:04

Is it that it will make it feel real if family know?

It’s so so hard to come to peace with something being wrong with your child.

Original poster

cloudyworld · 09/08/2024 20:05

We have told my parents and ILs (DC's grandparents) and my siblings and DH's siblings (DC's aunts and uncles). And so we have a good support system there.

However I don't now want to tell everyone I know eg. My own aunts and uncles etc. as I feel like it's private and ultimately if it's something DC might have to deal with forever we feel like perhaps it's something she should choose whether she wants to share or not. I also feel like the community I'm from is a bit sensationalist in that they probably won't understand or take time to read into it and it will become a Chinese whispers situation and I just want people to treat DC like they would anyone else as she grows up.

OP posts:

Mostlyoblivious · 09/08/2024 20:06

Just say that she has been quite unwell in hospital and that you’ve been advised for her to take it easy for the next couple of months which includes avoiding bugs and viruses.

Just to pick up on a prior post re genetics: let the hospital guide and counsel you there, not the internet.

I hope she is doing much better and that you are being offered support

SonicTheHodgeheg · 09/08/2024 20:07

We have doctors in the family too, so I don't want it to seen like I'm covering something up in case they think we're hiding something major about DC.

Isn’t it something major ? Won’t the doctors in the family help calm down people’s worries ?

Mumoftwo1316 · 09/08/2024 20:10

I'm sorry op, this must be hard and I hope your dc stays well.

I just want people to treat DC like they would anyone else as she grows up.

This isn't strictly correct though. You need people to avoid her when they have infectious illnesses. You perhaps need them to be mindful of her diet when giving her meals.

They'll be able to do all this if they're given at least some (vague?) version of the truth

DeathByResponsibilities · 09/08/2024 20:13

Those are understandable things...

but if she grows up with it as 'just a fact of life - her normal', she will never need to wrestle with the dilemma of whether to divulge or not.

Meanwhile, if you keep the secret she will have to engage in the subterfuges/obfuscation/excuses until she makes the choice to share.
You could just be making life pretty complicated for her.

Could you avoid the Chinese whispers effect by telling everyone all at once along with a summary of what it means for her life (care over diet etc, happy childhood) and what it doesn't mean (treat her like she's different)?

I don't know. It just be really difficult to know what to do for the best.

But while you want the information private all you can do is make excuses, and the people who do know can help you avoid any awkward questions.

I'm sure she will have a wonderful life with your support whatever you choose to do for the best.

PotteringAlonggotkickedoutandhadtoreregister · 09/08/2024 20:17

I just want people to treat DC like they would anyone else as she grows up.

but you don’t. And they can’t, because of the diagnosis.
Which is why I would tell them .

Getonwitit · 09/08/2024 20:37

I think you are being ridiculous, your child is a toddler do you expect to hide this until she an adult and can make her own decision on telling them? Do you want to go to family gathering and and keep her by your side in case they give her sausage rolls and other fatty foods Do you want to lie every time your little one is poorly. This is your family not a bunch of strangers.

MeinKraft · 09/08/2024 20:42

Tbh you've told enough people now that the rest will find out on their own anyway. It's not nice having everyone talking amongst themselves about your child's health but they're her family, they will have her best interests at heart.

izimbra · 09/08/2024 20:42

As the parent of a son with a life limiting disease (leukaemia) it wouldn't occur to me to keep his diagnosis a secret from my family. I understand the absolute shock of getting a serious diagnosis for your child, but you are setting yourself up for a lifetime of deceit, not just for you but for your child.

Hankunamatata · 09/08/2024 20:45

Just tell people the truth in sense she had a viral infection that cause complications and medication has suppressed her immune system so needs to be isolated as much a possible for next two months.

Assuming you toddler was treated promptly and has no complications from kawasaki there is no reason to tell anyone outside your immediate network.

madnessitellyou · 09/08/2024 20:51

Gosh op, must be scary for you. Dd2 was hospital once and there was a little boy of around 6 who had Kawasaki disease. He was really quite poorly and was making slow progress.

I do understand you not wanting to divulge too much, but in this case, I think you need to.

As for telling your dd, I also think you will need to tell her earlier, far earlier, than you think. My bf growing up had allergies, two of which could result in anaphylaxis. Even at age 4 she knew what she could and must not come into contact with. Children often know more that one imagines and the last thing you'd want is some cobbled-together factually inaccurate nonsense to be delivered to her by a well-meaning aunt.

Are there any organisations that cam help with framing this in a child-appropriate way?

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