SADS heart failure Son

Hi
My son died a few weeks ago following sudden heart failure. He was in a coma for two weeks but never recovered. He was in his early 20s. I cant see a topic for SADS but wondered if anyone else had experienced the trauma of an ICU stay and turning life support machines off. We also have the agony of an inquest and hospital investigation.

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Dear @Jules646

Welcome to the Community. I am sorry to hear of the loss of your son.

There is an organisation called SADS UK which may be of help to you.

I do hope it will not be to long before you get answers from the inquest and hospital.

Take care.

Pepsi

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Hi jules
So very sorry for the loss of your son .its the shock and trauma you are going through im deeply sorry . You have come to the right place go on the thread lost son at 27 . So many parents have lost there children .i would be lost without this life line . My son was 24 . Just 25 4 months he was gone from a rare cancer . Theres no word to make it better but we are on this awful ride. And you dont have to be alone on here take care big hug zoe x

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Hi Jules,
I am so sorry for the loss of your son. I also lost my son Tom to SADS this April. I came home from work to find his car still outside he was meant to be at work. I went up to his room and found that he had died in his sleep probably before I’d left for work that morning. The absolute devastation his death has caused to myself and his family and friends is unimaginable .unless you have been through the pain of the loss of a child you would never know.
I was initially told that it wasn’t SADS but then 10 long weeks later I was told it was. Tom had been feeling unwell for a couple of weeks and put it down to allergies but I could tell he wasn’t right. He wouldn’t go to the Doctors. He had his covid jab 3 days before he died. The guilt I feel is enormous. I blame myself for everything. He died on my watch so to speak. He spent one month with me and one with his dad.
Tom was my bonus baby, I had him at 39. He was my best friend ,he was only 20. It has been 16 weeks since he died ,I’m getting lots of help and EDMR for the trauma.
I hope you find your answers. I still have so many questions but nobody to answer me.
Nothing takes away the heartache.
Helen x

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I’m so sorry to everyone else who shares the awful experience I am going through. I understand the guilt and trauma and yearning and regret. Helen…the ‘on my watch’ thing…absolutely resonates. I sat by my son’s ICU bed for 16 days willing him to come round so that he could hear my constant apologies through my sobs. I had so many regrets that I didn’t do more. When they said they were turning his machines off I was not thinking straight. I asked them to bring him round first so that i could say it and he knew I was sorry. Of course they couldn’t have done that…what was I thinking?! But the guilt was immense and it tears me apart still. :broken_heart:

Helen do you think the EMDR helps? I have been considering it. I watched my boy collapse several times and we were in resus several times. Each time he appeared to recover and was sent home with ‘panic attacks’ . Each time traumatised me as I had no control over his treatment and I knew something must be very wrong but would not be heard by the doctors. He suffered so much and thats the thing that really breaks me now. I knew it wasn’t just panic attacks. He was dying in front of my eyes.

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Jules, when you look up.the signs and symptons for SADS it clearly states that passing out is one of them. To think that you did the correct thing and took him to the hospital and they failed to act is absolutely awful. I blame myself for not insisting that Tom went to the doctors but looking at what you and your son went through I’m not sure they would of found anything or listened.
We as mothers know when something is wrong with our children and should be listened to.
I am hoping EDMR helps me overcome the trauma of finding him and the counselling for the guilt at not having done more and for not listening to him. The day after he had his jab he was complaining of feeling very ill and I put it down to the vaccination, i told him he would be OK and take some paracetamol. That was the last time I saw him alive. He died in the early hours 2 days later, because of work I didn’t get to see him again.
I hope with help I will be able to live with that.
I can not begin to understand how you must of felt sitting next to your son all of that time, the hope you must of had and the despair . I don’t think you could of done anymore than you did. I hope you get some answers and that they may ease your mind.
I will let you know how I get on with the EDMR.
Take care of yourself
Helen

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Aahh Helen. That pain of self blame I know well. I cant even say anything to comfort you as I know it won’t work. People say to me every time I tell them of my guilt feelings “it wasn’t your fault” but it never has any effect. I kind of believe it wasn’t but there is a horrible feeling of hindsight that nags me to blame myself. My son, just before he collapsed for the final time, said “promise you won’t let anything bad happen to me mum” that pain of remembering my promise is immense. Xx

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Hi Jules and Helen - my daughter died in January. We are not certain yet what caused it and waiting for the inquest in December. What you both say about guilt and self blame resonates with me. My ‘sensible’ head tells me it’s true that no one is to blame. But my breaking heart tells me that something so awful and wrong and painful must be someone’s fault and, since I’m her mother, it must be my fault. It feels like a real pull between the two thoughts and emotions. To those who have never felt the loss of their own child it seems clear cut that no one’s to blame. For mums and dads tho it’s not clear cut cos we love them still and are searching for answers to the unanswerable. When someone dies suddenly and unexpectedly and is our child, it creates real clinical trauma for most parents. I’m still traumatised 6 months on, but I do have better days. The pain is always there but I’m less inclined to beat myself up and I can see it doesn’t help me, my daughter or anybody to blame myself but it’s not easy to let go of the feeling that somehow I should have saved her life. It seems to be a universal feeling for mums and dads. It’s a feeling though, it isn’t the truth. The truth is it’s the worst tragedy possible for my daughter but no one wanted or deserved it to happen. I think the depth of our emotions proves how much we loved them, and still do. Hugs xxxx

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What does EDMR stand for x sorry for your loss we are awaiting verdict on our sons sudden death at 27 .
I am lost he was .,is …my best friend xx

It’s EMDR eye movement desensitisation …its a psychologicql therapy for trauma. It can help if you’ve been witness to a death or traumatic experience of harm. Often used in PTSD.
So sorry for your loss. The waiting is horrendous. My thoughts are with you.

Eye movement desensitisation reprocessing. Its for severe trauma. Hopefully it will help me with the trauma of finding Tom. It will help move that last image to another part of my memory and replace it with another memory.
I am so very sorry for the loss of your son. I think the waiting to find out what happened is so awful. I thought finding out would make it a bit easier to understand the madness. It hasn’t. SADS was no answer to me. Knowing that Tom was supposedly fit and healthy and died for no apparent reason has very nearly broken me. He was my youngest, also my best friend. I miss him so much. I send you strength. X

Today I just cannot compute that I will never see my son again. It can’t be real. I have wandered around in a state of dissociation all day. Not speaking or interacting. I cant function without him. :broken_heart:

Oh Jules, I wish there was something I could say to take the pain away . This is a horrendous journey which we as parents should never be on. I am laying on my sons bed crying , it’s the bed he died in. I talk to him and text him. It’s where I feel closest to him…
Sometimes the loss is so great that you have to cut off and try and cope with the enormity of it all. I miss my Tom so much, I sometimes wish that I was with him but I have other children.
I am not much help i know. Just keep talking when you are ready and on the quiet days keep strong. Xx

Hi Helen
Yes, it’s only my other children that are keeping me here. Otherwise I would be gone. But I’m only half a parent now.