Should I explain to my children?

[Chaz1969]

Hi Michael here, I'm a single 50yrs young dad with a 50/50 sharedcare routine for my 2 wonderful daughters 5 & 7. On the 3rd Nov I was diagnosed with HF. I'm in AF and have severe this and mild that and not forgetting moderate too, with a EF <25%. Reading the discharge summary was a struggle and I needed a medical dictionary to make sense of it. I'm still taking everything in, but the first question that came to mind when the consultant told me was - how or do I tell the girls? Any advice would be great.

[080311]

Hello Chaz1969

Welcome to the forum, not somewhere you ever thought you would be joining! Your children are very young so explaining is going to be difficult. You certainly don’t want to frighten them. Words like Heart Failure is scary for us grown ups! Really it’s just our pump needs a bit of help. If you do a lot with your daughters running around and playing then you might have to say your pump is a bit sick so your not able to be as busy with them as you normally would. Again maybe a conversation with your daughters mother so your both singing of the same page.

We have lots of members who have Hf and with the right medication are doing really well.

So as a Mum of grown up boys you need to tread carefully. I had open heart surgery Aortic valve replaced and bypass, my sons are in their 40s eldest was ok after he spoke to my cardiologist the youngest was scared out of his skin 😩 that was 4 years ago and as I kept telling my youngest I had no intention of going anywhere yet😂

So feel your way with your daughters, simple words and reassurance that Daddy is ok.

You are now part of the Hearties family, if you need to talk someone will be here to listen or offer a shoulder to lean on.

I send you best wishes Pauline

[Chaz1969 in reply to 080311]

Thank you for the great advise Pauline 😁. You've help me massively.

[Prada47]

Hi Chaz

Have you been in good health and this has come on suddenly ? it makes such a difference as to how you approach this. If your children are used to seeing you unwell it won't make a lot of difference to know you have HF.

I know people who are 57 never mind 5 & 7 who don't understand H F which currently can't be cured but can be managed in the majority of cases. Have you been allocated a HF Nurse if you have I am sure he/she will be able to help you in what would be the best way forward in your current situation.

Wishing you Well

Hands Face Space to Stay Safe

[Chaz1969 in reply to Prada47]

Hi Prada, I am very much an active daddy. Running, jumping and chasing the girls around, and that is what is worrying me. To suddenly stop all that, they will get confused. I dont want to cause any emotional stress or them feeling at fault. I will chat with my HF nurse. Thank you and be safe.

[ellj]

I am so sorry you have to worry about this at your age, it's not an easy diagnosis at any age.

I have fairly recently been told I have HF but I am lucky because I know a lady who lived well into her 90,s after a diagnosis well before your age.

She lived a pretty normal life and travelled extensively.

I know others too who live a very reasonable life with HF.

As Pauline said your children are very young and only need to know that daddy is not feeling very well and the doctor said he mustn't run around too much.

I totally agree that it would be best to talk to the children's mum so that you can agree on what you both say.

Children are very resilient and accept simple explanations.

I'm sure lots of people will give you other views

Best of luck getting your treatment sorted, it can take a while to get the meds and doses right.

Take care

Ellie

[MichaelJH Heart Star]

There is a book explaining heart disease to children that was mentioned a few years ago but I cannot recall its name. laura_dropstitch is quite knowledgeable on books, both reference and fiction, about heart disease and may recall the name.

[Hidden]

Hi I have school age kids and a recently diagnosed genetic heart disease. I collapsed in front of my children and was taken away in an ambulance, so they knew that something was wrong and it had to be explained.

The advice I received was to only tell kids just enough information about anything and always make it sound hopeful.

My kids don't know I have a genetic disease that is progressing and that they will have to be tested for it one day. My eldest ( secondary school) understands I have an arrythmia and that I have medication and regular check ups. My youngest (primary school) knows that most people's hearts go boom boom, but for some unknown reason mine goes boom chicka boom and the doctors help me with it. They both know I can get tired quickly and can't run anymore.

They haven't asked for any further information but I have told them they can ask me about it any time.

I have deliberately avoided telling my eldest the name of my disease because if they googled it they would be terrified!

[Chaz1969]

Hi, have you involved any of the schools? I'm debating this as the girls school have ELSA who may help them understand.

[Hidden]

Yes, as they were a bit younger, nursery was involved because the youngest was terrified to leave me for about 4 months after the first collapse and would ask their teacher if I was OK frequently through out the day. I think if I hadn't collapsed there wouldn't have been as much anxiety.

I think it is worth the school knowing what is going on, so they can offer appropriate support. Many children have parents with all kinds of health conditions and schools are experienced with these things.

My kids are used to it now, one year on, more so than the adults in my life. The kids just adapted where as my parents find it difficult that their daughter can have a heart issue in her 30's!

There's some advice on the bhf website too: bhf.org.uk/informationsuppo...

[Shar28]

Hi Chaz. From my experience, I think if you’re calm about your condition that your daughters will be too. That’s probably very difficult just now because it’s all so new but you’ll get there. It takes time for everyone involved to get their heads round the situation - you, your loved ones, the girls’ mum and the children too.

The reason I say this? My husband was diagnosed with Dilated Cardiomyopathy just shy of his 56th birthday. His EF at the time was just 10-15% but that improved to 25% after 3/4 months due to the meds and he gradually became more active. His Aortic Valve then needed replacing and he now has a mechanical valve. He managed to retire (work caused the issue) and his EF then improved to 45%. Our children are grown up and we have grandchildren, at the time just 7 and 1. They know Grandad has a heart condition and doesn’t have as much energy as daddy. They can hear the valve (grown ups can’t) but it doesn’t bother them, it’s just part of grandad. They don’t worry about him because he can play with them etc, although when he was first diagnosed and after surgery they knew they had to be extra gentle with him in how hard they hugged him etc and the older one needed reassuring he was going to be ok.

This forum is brilliant for support and the BHF nurse helpline is wonderful, so feel free to shout out and and when you feel like it.

All the best to you and your loved ones.

[Handel]

Hi Chaz. I think it's all been said!!

Our grandchildren 5 and 3 are fascinated by my husband's chest scars following a quad bypass. They knew he was poorly before he had the op and just asked him if he was feeling ok and if he could breathe!!

Arthur, our youngest grandson, had the marvellous idea of sticking plasters all over his granddad together with straws up his nose (to help him breathe!!). Gave a new meaning to the Beatles "I am the Walrus!!

Take good care of yourself and your lovely family xxxxx

[Caro57]

Hi- your girls need to know daddy is not well but moderate the language- your HF nurse may have some hints and tips. Perhaps just keep it to something like heart not pumping as well as it should, so e.g. you may need to stop playing with them sooner or sit and read more than run around. Keep it very simple and don’t be surprised if there is not much reaction at that time. They will ask questions when they want to if you make it clear you are happy to talk when they are ready

All the best

[Hidden]

Hi Michael,

Welcome to what I hope you will find to be a very supportive community. Personally I have usually found that the advice and personal experience shared in here is helpful in cutting through the noise and alarmism of Google and often impenetrable medical ‘summaries’.

I am a 48 year old dad with HF, also with two young daughters (14 and 12). My condition was triggered by a massive HA 18 months ago. Prior to that I was exceptionally fit for my age but running very hot trying to combine an intense exercise regime (ex-military syndrome) with an equally intense career.

When I received the news that my EF was gauged at 34% via MRI, it floored me and my first thought was that I wouldn’t see my girls grow up. I did decide very early on not to use the horrendous (and inaccurate) language of HF. They understand that I had a serious incident, my heart is now a bit more delicate than it was, and I gobble a bunch of tablets in the morning (a bit fewer in the evening!). Other than that, life goes on pretty much as normal.

How are you feeling physically? It’s early days, so I would imagine very delicate, but it’s a far more important marker than any numbers. The good news is that there is every chance this will get much better with time. The medications for HF are really excellent if administered in the right combination/dosage for the individual. Most of us here have gone through some process of trial and error, but I am fortunate enough to feel relatively normal in myself and my exercise capacity is good (running 5k roughly every other day). I won’t go into the detail of my drug regime here, but suffice to say I think that any success is based on a great relationship and honest conversations with my cardiologist.

Happy to chat any time. Stay positive and focus on the good things in your life - it’s really important, and it works.

All the best,

Nick

[MEW123]

Hello, I am 44 and have what they technically call HF (silly term) but do pretty well considering, I have two girls, 9 and 8 and I am open and honest with them, had an ICD last year so can't and don't want to hide that. My view would be to be open and honest with your children, my parents hid everything from me as they would do in previous generations. My girls are under review at Great Ormond Street as what I have could be genetic. Best of luck with everything.

[jowalk6]

Hi Michael. I had a cardiac arrest at home when my little boy was 8 months old. I spent 9 days on life support and a month in hospital. Luckily he wasn't old enough to remember all that. I had an icd fitted. He is now 7 years old. I have been in hospital and had more surgery since my first event. I have good days and bad days. I just say mummy's a bit puffy today. When I was taken in again 2 years ago the nurses let him help domy checks and when I got out I bought him a kids doctor trolley and coat he loved it. I too am a single parent so I know its hard, but children really are tougher than we think. Take care hun x

[purplerain58]

Again not much to add, I know everyone's condition is unique to them but It was pretty scary when my husband was diagnosed with EF of 15 and then 7% with drugs its now around 30-35% and is okay. My daughter was in her teens when he was diagnosed and had a bit of a breakdown about it, was due to go abroad for a few weeks and was scared her dad wouldn't be around when she got back. I told her that Yes dad wasn't well but he was getting good care and that with medication he would be okay. and he is, she still worries a bit but we do talk about mortality, at 21 and with older parents I think it is important to talk about these things, not suggesting you do that with little one though although if they ask the question you need to be ready with an appropriate answer, gentle truth not lies, even if well intentioned.