My daughter died ten days ago

How awful. My thoughts are with you x

How very sad, my heart goes out to you and your family.

Can only say thank you

There are no words alie, just know that we are all here for you

So sorry for your tragic loss Alie! Losing a son or daughter must be the worst pain. And your anger seems very understandable. Perhaps in a while when the pain has eased a little you could help with publicising the risks. (((Hugs)))

Ali, I lost my daughter in January. No words really, just to let you know I have some idea of what you are going through. Your anger is completely understandable. I am so sorry you have this to cope with as well as your grief. You are very much in my thoughts.

Daisy for you too

Daisy, x

My 16 year old niece duied out of the blue 2 years ago, the inquest stated that cause of death was Sudden Adult Death Syndrome (SADS). We found out that 12 people under 35 die a week in the UK of undiagnosed heart conditions. It seems hardly a week ogee by when we don't read of a seemingly fit and healthy young person collapsing and dying running a marathon, or on the football field, or just at home like my niece. It seem incredible that more publicity isn't given to this. I don't understand why routine heart screening doesn't occur in school, for,example. I can fully understand the anger of the OP in discovering her DD died of something that might have been preventable. Hopefully your grief can be channelled into,raising more awareness of this. Love and hugs to all of you who have lost children, a sudden death in the family is always unbelievably shocking. 2 years on I can't believe a healthy and vibrant teenager could just be gone.

suzied

I hope the rest of your family have now been thoroughly screened?

So sorry to hear of the sad loss of your daughter Alie . I can't even begin to imagine what you are going through.

For you too Daisy and suzied

suzied i'm afraid it's not 'might have been preventable' in this particular case....it WAS preventable!
All she had to do was look after herself, get checked up, and take her potassium (and magnesium) pills every day.
There were other medications to help too - the only thing her body needed was to keep these chemicals balanced.
She didn't do it.....

She's wasted her life and we've lost her.

It is so hard for a young person who is in the swing of a busy life to get a grip on illness and the need to take medication and get check-ups. It is the same with young diabetics; they tend to deny what is in front of them.

I think it was the job of the medics to make sure that she understood the importance of her medication and the potential risks. If she felt well in herself, there was nothing to focus her mind on the importance of her medication.

She was busy getting on with life; and it is good that she was feeling well. Her life has been cut shot, but she did not waste her life - it sounds as though she was leading a fulfilling life - so sad that it was cut short.

I know that you must be feeling angry with her in a way and with the medics, and no-one could blame you for that. It is so hard when you know this was preventable.

What a sad time for you Alie - we are all here for you.

I meant she has thrown it away unecessarily

Yes my children have been screened now. We think it must have been a genetic risk from my niece's paternal side ( paternal GF died in his early 40s). Trouble is, many of these conditions can't be diagnosed at postmortem, since the electrical activity of the heart can't be measured then obviously. Some condition scan be picked up by screening, and can be monitored with medication. I am just going on about this as I think there should be more awareness, as with Alie's daughter's condition.

Yes Alie - how very hard for you all.x

Screening for baby possibly but he is only likely to be a carrier as I must be....it's a recessive condition in this case and very low probability of two carriers coming together.....nothing else in the families.

1 in 40,000 people.

It is a really difficult time for you Alie with lots going round in your head.

There was talk of DS's stroke being as a result of Hughes Syndrome and then, when DD3 had repeated miscarriages, we investigated a bit and discovered that Hughes could also be a factor in that. Added to which DBil has dreadful arthritis [yet another indicator]. We suggested all of us should be tested but the doctors said there was not enough evidence and refused.

We offered to pay for our children to have tests but they prefer to remain in ignorance.

We carry a genetic problem - my brother and I are carriers, as is my DD and her son. But my other 2 DDs chose not to be screened as they thought it unlikely they would marry someone who was also a carrier. So far they have been lucky.

Alie - you are much in my thoughts, although that is so little to offer in this situation. x

So many sad posts here, and not a lot more can be said, just hope that sharing does a little to help, not sure about that, but if it has, then good.

Thank you, everybody.

Thinking of you Alie
Such a tough time for you x

It's very stressful indeed.
I have just been talking to the Child Death Helpline and it has helped, she actually put her finger on my problems and made suggestions and I really feel relieved......

One, that I wanted to sing at the funeral and felt too scared, as it has got much bigger than I - or my sister - ever wanted....but I could record it.

The other, that I hadn't said to anyone, that Jayne was the one who said she would look after me when I get too old to manage - she said it and I just burst out crying. No way do I want to go in a home
So I got to talk about that a little too.

Oh Alie - so many thoughts drop into your mind at a time like this and get jumbled up. One step at a time is the way to go.

I am so pleased that you found the helpline supportive.

I recorded a song for both my Mum and Dad's funerals. You could give it a go.

Yes, I think so. Especially as I want to speak as well.

But how to record it...Think I know the right person to ask though. One of my grandsons.