My daughter had a cardiac arrest upon waking up whilst on holiday, she's only 16 and fortunately her sister was sharing a room with her and came to us for help. My wife went outside our chalet for help whilst I did all I could not knowing really what was happening. A friend off the campsite came in and took control saying we needed to give CPR. She, the friend pushed down on her chest whilst I breathed into her mouth we did this until the paramedics arrived which seemed like a lifetime but was probably around 15mins. They came and took over giving her shocks with a defib until they got her heartbeat back. Her recovery involved having a ICD fitted and being put on beta blockers. I'm so grateful that she's still with us and seems to be recovering well. The only thing is I'm very scared and I think so is she that it could happen again. I also have very dark thoughts with flashbacks to what happened and I really have not felt right since although I am obviously so grateful I still have my beautiful daughter. I really just want to move on and see my daughter happy like we were before. I need to know that she'll be alright I'm really not that bothered about myself but I do feel so unhappy although I know I shouldn't. If she could just get some help and advice it would make me happy as well. Thanks for any help in advance.
Long QT: My daughter had a cardiac... - British Heart Fou...
Long QT
That must have been terribly traumatic for you and your family. I hope you find some reassurance soon that the ICD and other treatments she is receiving is working and will keep her healthy and safe x
Thank you I hope that her follow up treatments make us all feel more assured. Thanks for your kind words. x
Hello 
What a traumatic time for you , your Daughter and family I am not surprised that you feel as you do and your Daughter to
It is early days though and at the moment these memories will be very vivid and the fear will feel quite strong but slowly things will get back to normal and your Daughter is now under the radar so to speak so will I presume have follow up appointments where these questions need asking if they have not been already
Has she had Rehab ?
If not then find out how she can access it as when the time is right this will really help her
How you are both feeling you need some support maybe I wonder if some Counselling would help this is something you could ask yours and her Doctor about
The BHF Nurses are excellent to phone and talk to full of information I will put you the number down as they could have some suggestions
You are a parent and will never stop worrying about your Children but for a parent to whiteness what you did is going to take some time to move forward
If you need to talk just post don't sit suffering when there is all this Community here to share their experiences and advice
Keep us updated how you are x
Heart Helpline team on 0300 330 3311 Mon-Fri 9-5pm
Thank you for the advice and phone number I will definately give them a call. Hopefully when we get a follow up with the hospital we can ask some more questions and get advice. I'd just like to feel more useful and be able to help her get through this and come out the other side although I understand it's something that will always be there. I've found that I just don't want to talk to people I know about it and haven't even told most of the people I know what happened. I guess I don't feel as though they are trusted friends that I can rely on that's why I thought posting this to people I don't know at least enables me to get it off my chest. It has made me feel very insular and untrusting in fact if anything it has cut me off from most of the people I know.
Thanks for your kind words it's very comforting to know that there is someone I can confide in. Best regards x
Hello
Been a parent to 3 grown up Children myself I understand we usually can fix problems for our Children and then one comes along that we can't and then we feel we are failing them or we are useless but we are not because we are there for them to give them a hug to let them know we care to wipe their tears to give them confidence everything will be ok even if we are worried we don't show it we put aside how we feel to make them feel safe and I am sure you are doing all those things and many more so you are not useless at all you are down and when we are this is what our minds start doing dragging us down even more but I bet your Daughter sees you as someone that makes her feel loved and safe and not all parents can make their Children feel that way so you are doing a good job and she would be lost without you been there for her
Again I sense how low you are feeling at the moment and sometimes it can be so much easier to talk to strangers about how you feel rather than those you know maybe somewhere you feel they may let you down and at this time you cannot take anymore if they were to do that but in time you might be able to open up to them and you may be surprised at how supportive they will be and as I always say if they are not then you have not lost anything as they were never real friends in the first place
For now you do what feels best for you to help you get through this and talk with us and honestly your Daughter will get through this to in time in fact I have a feeling she will bounce back quicker than you might as she is young and even though she has had this heart event she is strong and she has you for a Dad so a very good combination for a good recovery for her and she will be out there enjoying life again before you know it
All the questions you want to ask when you go for her appointment start writing them down now as you think of them if you are not doing already as this appointment and the replies will help you to make better sense of all this x
Thank you for the great advice I will make a list to ask the specialists when I get chance, that's a good idea. She starts college on Monday and I'm glad to say she's looking forward to it. I guess as i get older I have less and less patience with friends and never feel that they are to be relied on, although there are probably a couple who I should open up to. Thanks again for the advice it has been very helpful. Kind regards x
Hello
How lovely she is starting college and looking forward to it I feel this will help her with what has happened a new start and a bright future to focus on
Maybe then if you feel a couple you know you should open up to you could consider doing so in the near future as I think it could really help you x
Thank you for your kind words. x
x
I'm sorry you had to go through this experience and glad to hear she is recovering well. You are dealing with a 'new normal' now not to mention the trauma of the experience itself. As you mention you are finding it difficult to talk to people you know, I think Counselling would really benefit you. You really need to be heard about what a painful experience this was for you. It will also provide a safe space to talk about any current worries you have.
Thank you so much for responding. Yes we are looking for counselling for all of the family especially my daughters. I have got such great advice from this forum and it has really helped me to be given direction as to help and places to go for it. Thanks for your kind words x
Very sad to hear of one so young having a heart attack..did you find out why..or which part is damaged?..There is great help available. ..with an ICD her heart function should be like someone who has a healthy heart..at first any prognosis about heart failure is a shock..and it means that there is a weakness somewhere..but it should really not be called failure..because we are all still here..when she gets her meds sorted..she will live a normal life...as a mother it is shocking and sad to hear of your 16 year old daughter having heart problems..as we usually associate this with the elderly..but therecare a few younger ones here as well..you will see..that there is hope..and with the right care and information..and time..you will be able to relax as well..I hope your daughter improves every day..she has a beautiful life ahead
Hi there,Perhaps I've missed something or misunderstood?? It's just that you mentioned heart failure?? I've had 3 haert attacks in 3 years, 2 failed stents and 2 collapsed arteries, then a double cabg in January of this year. I was diagnosed with heart disease, not heart failure. They are two very different things. Please don't think I am being rude because I promise you, I am not. The words failure and disease are bad enough when it's your heart. I'm just wondering why you mentioned heart failure in relation to Billy's daughter? Perhaps I've missed something or not read his post properly? I'm sure I didn't read heart failure anywhere? My condition was genetic on my mother's side. Now that I've had my bypass I've been given a clean bill of health and no longer have heart disease. I know only too well how worrying it is when you are diagnosed with something wring with your heart!! Health anxiety is very common. Of I have misunderstood something or missed something then I really am very sorry. Its just that after my experiences in the last 3 years , the ladt thing you want is a label for something you don't have. Xx
Most diseases of the heart are termed heart failure...it does not mean that your heart has failed...it is the term they use..and a heart attack was caused by something that was not right with the heart..as is Lllb..or cardiomyopathy..etc...I agree the term is thankfully misleading .
Sorry to correct you but that is not true, i have electrical problems with my heart which is genetic and have an icd as i am at risk of a ca, I don’t have heart failure and have never had a heart attack. An ICD does not not improve heart function but is there to shock the heart in to a normal rythm should it go into vt/vf which leads to cardiac arrest
Hi again, I'm wondering if you have had or have heart related issues?
I understand your definitions bit I'm afraid I have to slightly disagree based on my own heart related problems over the last 3 years and also what I have been told by my surgeon ,cardiologist and cardio rehab team. I was termed as having heart disease because of the 2 arteries that had a build up of plaque..the term disease is not the best I don't think. I do not have heart failure and never did..I no longer have heart disease as I have had a heart bypass. I now have a healthy heart. I have never at any time heard the words heart failure in relation to heart disease. Perhaps you have been advised differently by your health care professionals? Having heart disease is completely different from.having heart failure. Thankfully I now have a clean bill.of health
Yes I do have HF...and take entresto and bisoprolol.
Hi
I am so sorry to hear you have heart failure. I hope you are well and living life to the full. Take good care wont you. x
A heart attack is when blood can't reach the heart; heart failure is when the heart fails to circulate blood properly; cardiac arrest is when the heart suddenly stops beating...finding out the reason will define what has happened
Hi sorry to hear about what happened thank god you got her back ,do you think you might have PTSD over the event ,that perhaps why you are reliving it and the dark thoughts Time really is on your daughter's side she's young and super strong and can take anything ,even a heart attack, what a super strong girl
Thanks she is so special and I'm very grateful that she's seems so positive. Perhaps I might have PTSD but it pales into insignificance when I think what she's been through. Thanks for your kind words it's so nice of you.
I can imagine that as her parent and feeling like a powerless witness miles from home and your normally has had a massive effect on you mentally, that's a natural human response... who wouldn't?
I hear you saying that your daughter is recovering and starting college, that's incredibly inspiring you must be both over the moon and flabbergasted?
You have protected her for all these years, so It is almost easier as the patient than the parent to 'recover' from maybe?
But you did the job ... you successfully saved your daughter's life that day, by being there when it mattered
She has bounced and you are left with all sensation of normal shattered, I don't know how to process that but there will be those do .. please don't suffer in silence
I want to send you a hug x
Thank you for your kind words they are so appreciated. kindest regards x
What a worrying and traumatic time for you. It’s not something anyone wants to experience but a parent of a teenage daughter…goodness me. Let me tell you my/our experience. Christmas Day 4 years ago my, then 82 year old father suffered a cardiac arrest whilst I was driving them to our home. I was minutes from home and when I got home my husband pulled him from the car and started CPR. He did this for 18 minutes until the paramedics arrived. Me…I was so grateful he managed to bring my Dad back. The best Christmas present I could ever wish for. We had another 2 years with my Dad. They weren’t able to give him a pacemaker or any other help. He already had a weakened heart so he was truly a miracle.
We were all so very happy to have him around and I never hesitated in telling people how my husband performed CPR and gave us my Dad back. He however struggled so badly. Lots of flashbacks and tears whenever we talked about it, to anyone. I would ask him to talk to someone and get some help. He was very stubborn and didn’t really think he had a problem requiring talking to a stranger. Eventually, a year after my Dad passed away he got some help. He had weekly sessions with a counsellor. He was given treatment called EMDR (eye movement desensitisation and reprocessing). Now he can talk to anyone without shedding a tear. No more flashbacks and painful memories of that Christmas Day.
Fast forward to June 2023. I was already treated for high blood pressure but nothing could have prepared us for that night. I didn’t feel well. I knew something wasn’t quite right with my heart. My husband called 999 and help was sent. I had a rapid heart beat which the paramedics sorted. An ECG didn’t show a heart attack but they asked me to pack a bag to go with them. I collapsed back onto the bed and I too suffered a cardiac arrest. My poor husband witnessed a 2nd cardiac arrest in our home. He wasn’t hands on this time but still saw it unfold before his eyes. I needed a quadruple heart bypass and now 10 weeks post op.
I worried about my husband needing that help again. We had made a huge step forward with his treatment. Fortunately he’s remained strong and no flash backs, tears or bad thoughts of what happened. My advice would be to seek some help. Make it sooner rather than later. Don’t waste precious time. It’s important your daughter sees you as the strong father she looks up to and respects. You don’t need to tell her what you are doing but I think it would help the healing process and help you to move forward.
I hope she continues to stay healthy and gets the treatment she requires. Good luck
Thank you so much for the information, I feel so sorry for what you and your husband have been through. I will get help and hopefully can guide my daughter better through getting her all the help she needs. You are an inspiration to me and I thank you for sharing your experience. I'm grateful for your advice and will hopefully act upon it as soon as I can. I'm sorry for your loss of your father I know how hard it is when they go fortunately we have our memories which we carry every day. Best regards x
Thank you for your eloquent touching story ... i love that this forum is here so we can read and share such fantastic advice from the horses mouuth from many a seasoned traveller x
Blinking heck, how awful. No wonder you and she are scared after a shock like that. Fingers crossed for her continued recovery.
Thank you for your kind words
Hi Billy-no-mates
Gosh what an incredibly emotive story; I’m so pleased to hear that your daughter is recovering well but certainly sounds like a very traumatic experience!
The best thing you can do for your daughter is be there for her and listen to her - she’ll tell you how you can best help or what she needs (when she’s ready/knows) I’m sure.
I have never had to resuscitate someone thankfully but I would imagine that you wouldn’t be alone with what you’ve been experiencing since the event. When you’re ready, maybe seek some professional support to address and move forward from this trauma.
However, I would really like to commend you for recognising how you’re feeling and additionally speaking up about it; we might be strangers but just this acknowledgment is huge for your own recovery from the event and I think you should be proud of yourself for not only contributing to saving your daughter’s life but acknowledging the impact that it’s having on you.
I know how much my 3 children mean to me and I think you’re incredibly brave!
Be kind to yourself, allow yourself to feel whatever you feel and do what feels like the right way forward for you and your family.
Sending best wishes to you all! ❤️🩹 ❤️
Take care
Soap 🧼
Thank you so much for your kind words it's a real mixture of emotions as to how to process things from being so grateful to feeling very sad. It's nice to know what kind people are about in the world that you have stopped to take time to speak to me a stranger. The world is a better place for people like you. I certainly met so may during my daughters stay in hospital from paramedics to nurses and surgeons and right down to the orderleys and cleaners that were so kind. It does give you hope in a world where everything can seem so negative. Kind regards x
What a scary experience - I am so glad that your daughter is recovering. I don't really have any advice, but a similar thing happened a few years ago to a friend of my daughter's . She was about 20 years old at the time, and fortunately her mother was in the house and was able to give CPR until the ambulance arrived. She was taken to hospital and given an ICD and pacemaker. She went on to complete her studies as a physiotherapist, and she is now happily married with two children! I just thought that this might reassure you that it is possible to lead a fulfilling life even with this condition. All the best to you and your family.
Thank you so much for this encouraging story it gives me so much hope to hear this, my daughter starts 6th form college on Monday and it's so nice to hear such a positive story that gives me hope for her future. You don't realise how much a story like that means to me as a worried father. Kindest regards x
Oh my goodness what a horrendous ordeal. As a mother myself I would be in such a state. Thank heavens your daughter is ok. Did they have a cause for the cardiac arrests or will she be having an further heart testing.
Please stay strong, all the best to you and your family xxx
We are all with you sending our support whenever you need us
Hi sorry to read your horrendous post, hopefully things can only improve. Have you looked up CRY Cardiac Risk In the Young? They have really good advice on this condition and can offer support to you all. I have this condition , it was acquired through medication, it can be genetic or acquired,
I'm so sorry your daughter, yourself, her mum and sister had to go through this. I can't even begin to imagine what you're feeling. As others have mentioned, counselling would really help and cardiac rehab would be great for your daughter which really helps build your confidence back after a heart event. I did both and feel so much better for it. I had an ICD fitted as a preventative measure and feel so much better knowing it's there waiting to kick in as my insurance policy should it ever be needed one day.Your daughter is young and can go on to live a long healthy life now she is on the right meds and has her protective device.
Wishing you all the best for the future and sincerely hope that in time, the dark thoughts and memories will fade away and you are able to concentrate on the future. It takes time, but it will happen. Counselling helped mine to fade, now it's replaced with thoughts of being so happy and grateful I'm still here to watch my little girl grow up.
Oh. I do feel for you and understand your feelings. My son had total heart failure, was resuscitated and in an induced coma for 2 days. We didn't know if he'd suffered any brain damage. He's recovered perfectly well but TBH it took me quite a while to get over it. The prospect of losing your child is indescribable, and the what ifs keep going round in your mind. I realised the what ifs didn't happen, my boy was alive and 9 years on with medication is perfectly OK and living a normal life. You have your precious daughter and she will be living her life as a normal teenager. The BHF have wonderful support and I would also recommend Pumping Marvellous, a hugely supportive group for people and family members who have heart problems. Thank you for sharing your worries and concerns and best wishes for your daughter and you and your family.
Thank you for your response I have never heard of pumping marvellous and will definitely look into it. I'm so glad your son has come through this and your experience as hard as it was for you and your family has been an inspiration for me . Thank you so much for taking the time and sharing it, you don't know how comforting it is for me at the moment. Kindest regards x
I can only send you a virtual hug. How are your other daughter and your wife? It must be as traumatic for them too.
Thank you for your concern we are all looking as a family for some therapy and moral support. Thank you for your concern with kindest regards x
Billy, what a horrific experience. Firstly, of course you are worried that it might happen again. Your internal threat system is still jangling. And anyone would feel the same, it's normal. Secondly, bear in mind she now has the ICD and is on medication which changes things, she's protected in a way she wasn't before so the likelihood of it happening again is much much less.
Thirdly, if you continue to have flashbacks please do get some help. Not just generic counselling but a therapy specifically for this kind of trauma called EMDR.
And fourthly, wow what a guy you are for going into emergency mode and saving her.
All best wishes.
Thank you for your advice and kind words I will definitely follow up on it . Thank you for taking the time and be caring enough to reply. Best regards.
I’m so sorry you all had to go through this.
It happened to me on holiday in Crete last year. I’ve never felt so scared and for months afterwards, I couldn’t be alone with mout having a panic attack. My husband thought I was having a seizure but it agnonal breathing and thank his he came back to bed that day or I wouldn’t be here. As a result, he became very overprotective of me and was scared to leave me too.
Have the hospital offered your daughter counselling? I had some online talking therapy and although it was nice to be with a group of people who had gone through similar experiences, the therapy didn’t help quash my anxiety. It’s been just over a year and I can’t drive on motorways, take a bath etc as I’m scared I will have a “lights out” moment. Sometimes I’m scared to sleep as I wake up in a panic thinking I’m dead. I have an ICD implanted so I take so much comfort from that but sometimes, panic takes over and logic goes out of the window.
I think the only thing worse than what happened to me is the idea of it happening to my child. I honestly can’t imagine what you’re going through and I feel so badly for your daughter going through it at such a young age. Just re-read your post and I’ve welled up!
Will they be carrying out more tests for her Kong QT? Was she on any meds which could have caused it?
I'm so sorry that you went through this and are still living with the fear. I am looking for counselling for my daughter and will definitely discuss this at the follow up checks at the hospital. No she wasn't on any meds it came totally out of the blue. I'm told it's genetic so my other children are being checked. Thank you for your support it's very helpful. I hope you too get more comfort as time goes by. Kind regards x
Best of luck with you and daughter as I think you will both need some form of counselling. Look into EMDR therapy too - the best for trauma xx
Hi BillyHow awful for you all. What a terrible fright you must have got.
The good news is that your daughter survived and is doing well.
Have you been given any advice or support from your own local hospital?
Is your daughter now with the cardio rehab team?
She has age on her side which is a good thing, even though its an awful shock someone having a heart attack at age 16.
The BHF and CHSS are both very good. You can phone them Monday to Friday and they are specialist cardio nurses who give wonderful support.
When I had my first heart attack I 2021 I realised there wss no support as such for me or my husband. I've no idea why?? Face to face support groups would really help but there are none?? That was when I found the BHF and CHSS. I think they would help you. I hope so. Take care. Xx
It's still very early and we haven't had a follow up just yet at the hospital so I wasn't aware of a cardio rehab team. Thanks for telling me I will ask at the hospital when we follow up. Such good advice and I'd like to thank you for taking the time and care to reply to my post. Thank you so much best regards x
Hi Billy,
Of course it is early days and you must feel your head is upside down!!! The good thing is that your lovely daughter is looking forward to going to college. Ive just read she has long QT. I dont even know what that is i am afraid so i will look it up!! Take any professional advise you can and start writing down questions you want to ask once you eventually get to see a specialist. I really do wish you and the rest of your family all the very best.Please take care.
I can't imagine how awful that must have been for you. You have been given great advice in the replies. I was just wondering, you speak about how you feel and how your daughter seems to be feeling, how is your wife and other daughter doing. This was an awful event that involved the whole family. Perhaps some family therapy might be helpful.
They are both in shock and also very worried. Family therapy is a very good idea it has been hard for everyone and we have had a few meltdowns which is not the way we used to be. My one other daughter has just gone off to university and I know it has been hard for her to leave the family home. Thank you for your advice and taking the time to reach out. I will take what you have said and hopefully can get them some help also. Kindest regards x
Hope all goes well for your daughter, and so for you. I am sure that you will have found very good medical advice, and her youth is much to her advantage. Try to keep as balanced and positive as your letter seems.
warm good wishes
Tavishock
Thank you so much for replying and your kind thoughts are of great comfort x
You are welcome. Your predicament seems much worse than mine, and you seem to be dealing with it admirably. Good luckTavistuck.
Thanks again for your kind words x
Hi there
Just wanted to say I totally get where you’re at. Our youngest daughter was 14 when she had a massive seizure when we were sailing in France. Thanks god she pulled through but it felt like an eternity during the event and made worse because we weren’t even on land. I remember how useless I felt afterwards when she came out of hospital after 4 days - I wanted to wrap her in cotton wool forever but you cant.. I used to set an alarm and get up at night to check she was still breathing. She was diagnosed with epilepsy and she has had an ‘interesting journey’ but now at 29 years old she is living a full life. On a zillion drugs, has to pace herself, but she manages a full time job and did the london marathon in April this year. At one stage we thought she would never be able to do any of these things. I won’t lie it has been very very scary at times but she has found a way through. And I am extremely proud of her ( she does quite a lot for the epilepsy society and has a couple of stories on there - Francesca Fox)
Be strong for her, let her know it’s okay for her to be scared but don’t dwell on it. Positivity is what you both need now. You will both come through this and you will look back and feel very proud of what you have both endured. Look to the future and understand that this is just a part of both your journeys. It’s so so hard when you are in the midst of it - it feels overwhelming.
This forum will def give you loads of support and information so reach out as often as you need to. If you want to message me at any time feel free - I have no knowledge of what your daughter is going through but have experienced the journey of living with a daughter with a life threatening Illness.
Sending you love & hugs x
Thank you so much, you must be so proud of your daughter. My first thoughts when it happened was that she was having a fit and fortunately the kind friend that just so happened to be passing our chalet seemed to know straight away what to do, I owe her everything and we are in constant touch with her and her husband. I can't imagine how you felt being away from land, I was so glad when the fast response paramedics arrived to take over and use the defib. They were really angels. Infact the whole of Truro hospital which is where she ended up were so kind and professional. I owe them everything. I'm so glad your daughter is doing so well and is a credit to her lovely parents. Thank you for your advice and kind words. X
Plenty of emotional support here, but have you gotten anywhere on the underlying cause ? This is not supposed to happen to 16 year olds. I would not rest until I found the reason and the solution to keeping my daughter alive.
God bless and good luck.
Yes she has Long QT which is a genetic condition and is on medication for that condition It's good to know what caused it but obviously is very worrying for my daughter and the family. Thanks for your kind words.
Hi, I have Long QT and so do both of my children. Unless it was medication induced, has your daughter had a genetic test? Have you all been tested? If not, due to holiday situation, please see your GP asap. You need to be seen at a specialist inherited cardiac disease clinic. Local hospitals won't know how to deal with it. CRY and SADs are the two best charities for advice for Long QT. They will be able to advise you on your nearest hospital with a specialist that knows about this. Until then please make sure you check Credible meds before you take any medication, even over the counter ones. Medications can trigger the heart, even cough medications and some cold treatments.
There is no easy way to live with the risk of it happening again, different people cope in different ways. I cope by taking a defibrillator everywhere with my children but they are high risk and we have the wrong type for ICDs. There are facebook groups for families that have long qt. Some of the stories are quite distressing. Many families discover they have it once they lose a young child. However, they know all the issues and are some of the few people that understand what it is like to have a child that is at risk. You might find it easier to talk to someone who understands it.
Be kind to yourself and allow yourself to feel whatever you are feeling. You seem to be expecting normal behaviour in an abnormal situation, give yourself time. We went through a period of denial and tried to just live life as it was before but it hit us all at different points. I eventually found that I was grieving for the time before I knew about long QT and then feeling guilty that I wasn't grateful I found out before anyone died. It got easier when I allowed myself to miss the time with less worry. You get better at living with the worry and periods of normal happiness return.
ICDs and beta blockers prevent most issues but lifestyle changes can be necessary too. You all need time and support. I wish you all the best.
Thank you for taking the time and care to respond. I had never heard of CRY and SAD so this is really good advice for me and I'll definitely look into it. It's comforting to know that we are not alone and your sharing your situation has been of great comfort to me. I'm sorry that you have to live as a family with this terrible condition, but your reaching out to me shows how lovely you are and it has really helped. Sending you all our love and hope you all live long and happy lives. Kindest regards X
OMG, as mother I read that with a huge feeling of shock and instantly imagined how I would have felt in your position. I can't imagine anything more frightening . Please do get help. YOu must be suffering from PTSD. Someone has already given you he number for the BHF nurses. They are really lovely and will point you in the right direction or talk to your GP. I assume you will go to future appointments with your daughter so do start writing down any questions you have immediately so you don't forget them and take the list with you. Maybe even ask the consultant if you can speak to him privately so you don't worry her unduly. How does she feel now? Mentally I mean rather than physically? She will probably need help too in coming to terms with what happened. Rehab will help a lot with her confidence although she will probably feel odd with a lot of older people. There must be special counselling for teenagers. I really wish you well.
Thank you, yes my first concern is getting her counselling and what a good idea to look into a group with younger people to share their experiences. It is still very early so I will ask the hospital on her follow up consultation. This is all great advice and I have taken comfort that so many people such as yourself have reached out. With kindest regards x
Rehab does tend to be full off over 70s; not an ideal situation for a teenager although it will boost her confidence. You all need counselling. Best of luck.
That must have been a treble experience for you all. The ICD and pills should do the trick. i'm glad she is starting college and looking forward to a long future. Think what Christian Eriksen is doing "Only 18 months ago Christian Eriksen suffered a cardiac arrest during Denmark's Euro 2020 match against Finland. After surviving the incident, Eriksen had an implantable cardioverter defibrillator (ICD) fitted to regulate his heart and returned to competitive action in February." dated nov 2022!
Yes Eriksson has proved what people can achieve and when I listen to what others have just told me about their situations I'm very heartened to hear such incredible stories. They have all been a real comfort at this time. Thank you for taking the time to respond. Very kind of you. x
Hi, sorry to hear about your daughter. My daughter now 17 has a severe complex congenital heart condition who over the last few years has suffered with mental health due to PTSD She has had psychology which has been a great help.
There is. Couple of charities that work with families who have children with cardiac conditions. The children’s heart federation and Heartline.org.uk , you can also find Heartline Families on Facebook they have a forum which is good to talk to people in a similar condition you will find a few parents/families on there with long QT.
Thanks for taking time to respond and thank you for your advice. I had never heard of heartline so I will definitely look into it. I'm sorry that your daughter has suffered so much both physically and mentally. Your advice hopefully will help my daughter to cope in some small way. It has been difficult but caring words and good advice from people such as yourself has given me such comfort. Thank you again I do hope that your daughter gets better and better day by day. With kind regards x
That was very traumatic for you, there are alot of people who can give advice and it all will help. I was wondering. If your daughter has been found to have a long Qt? Does that come under congenital? The reason iam thinking about it, is that I have a congenital disease and I am under an adult congenital heart team, also I have signed up to the sommerville heart foundation. I hope you can get as much help as needed. From my personal experience iam going to talk to the cardiac phycologist at my local achd department who put me forward for this. I know some of what you and your family are going through.
Yes she does have Long QT now my other 2 daughters are also being checked for this condition so we are hopeful for good news, Thank you for taking the time to reach out. I hope you continue to stay healthy and happy. With Kindest regards x
sorry to read of your daughters health experience- my husband has an ICD, he suffered two cardiac arrests a week apart fortunately whilst in hospital when recovering from heart surgery. It does take time to adjust - mentally recovering from a cardiac arrest and fitting of an ICD , also for your family after having to perform cpr - fortunately now, if your daughter experiences another cardiac arrest her ICD will activate and save her life …you will receive after care from the ICD team - my husband initially saw his ICD team every 6 months now every 12 months with a new 6 month phone call in between.
Seeking counselling individually and as a family is worth while and will help you move on.
3 years post surgery , my husband doesn’t notice his ICD , it has never activated but he is extremely grateful he has his own personal life saver inside him if it’s ever needed.
All the best to your daughter and your family as you recover from this traumatic health worry 🙂
Thank you for giving me a boost with your positive attitude and advice. It has given me so much comfort to hear from your example. Thank you again x
Just catching up and firstly let me say I am so sorry to be reading this, I bet you guys are frightened and your anxiety levels must be all over the place, given the right support you will get through this, there are lots of people out there to talk to speak with the BHF nurses and make a list of everything you would like to ask, also ask to speak to a counsellor I found this invaluable in my recovery I was shown techniques to cope with my feelings and my fears, use your follow up appointments with the heart consultant to discuss Your worries and to understand what treatments are available.
Please come on here and keep us updated just getting things that are on your mind shared someone will always answer and try and advise different things you can do.
I wish you and your family all the best
I will contact the BHF nurses and like you said make a list of all the things to discuss, This forum has been so helpful and I thank you for replying and reaching out, I don't feel so alone now. Kind Regards x
You come on here anytime and tell us how you are feeling, and once you get some answers to your questions you will be more able to manage all that’s going on.
Keep us posted 😊
I am so very sorry to hear about your daughter. I can empathise with you completely. Please keep talking to professionals and seeking help.
My niece at 29 passed away from LQT two years ago. (3 weeks to the day before her wedding and on the morning of her hen party). My brother found her and tried to save her along with paramedics and air ambulance crew. We had no idea she had this condition . This opened a minefield!
Their doctor pushed for medical teams to investigate the family and we now know that this is hereditary and my brother and my nephew have LQT. They are now on beta blockers and other medications. Morning nephew’s baby, our great niece has the gene as well. She is on beta blockers and is being tested regularly for signs.
My brother and sister in law are having counselling. My brother isn’t coping at all. He has flashbacks and guilt and is constantly worried as any parent would be bless him. We are all grieving and trying to support them all as much as we can.
The professionals say one of our parents had this. Sadly but also a good thing (not here to suffer with us),our parents are no longer with us. I have been checked and am okay so my children do not need checking.
Please, please continue to get help and please push for your family to be checked.
This is far more common than people realise as it isn’t talked about enough.
So sorry to hear your heart breaking story. I realise that it is more common than people expect I believe 1 in every 2000 is the estimate. My 2 other daughters are being checked. It's so sad that your niece died at such a poignant moment in her life and it seems very cruel. My daughter has just caught the bus for her first day at 6th form college, something a few weeks ago didn't think would be happening. She insisted on doing this herself but obviously I'm so worried. Life is so fragile but we don't even know this until something like this happens. I haven't spoken to many of my work colleagues and listening to them moan about such little nonsense things so as the price of a coffee in the canteen or having to do a simple task really can grate on you. I'm so grateful that we caught her at the point of arrest . I hope that your family one day learn to have some happiness although I know that they will never truly get over this. My thoughts are with them even though we'll never meet. Again so sorry for what your family has been through and thank you for reaching out. Kindest regards x
Seeing the number of responses you have had I hesitated to add any more, but I am haunted by your story because it echoes some of what has happened to us and our fantastic son. So I can imagine the sheer blind terror of the fight to keep your precious daughter alive for 15 minutes that felt like a year. I also know the dark place you are in with flashbacks, sleepless nights and an ongoing state of hypervigilance that can't imagine how life can go on without a repeat of this awful experience.
Without going into full details, my son had tongue cancer for the second time, which was bad enough. But when he was discharged after surgery- this was in lockdown - he haemorraged catastrophically and had to be rushed to hospital, having lost lots of blood and went into shock. Thank God two ambulances arrived in six minutes and got him to hospital for surgery at 2am. Then ICU.
All I want to say is that I suspect there is a certain amount of suppressed anger in what you are feeling right now. I realised it after a while. All your expectations of life have been upended by nearly losing your child. It is totally unfair. Maybe you hesitate about continually going over it with your wife as you know it will rekindle it all for her. You feel your friends won't understand, or may want to talk about it when you don't. It's a lonely place to be, and you must stay positive for your daughter. I have felt all this. You are in mourning for your previous life.
All I can say is hang in and know it will ease. Also seek help. There's so much good advice in his thread. Cardiac rehab, specialist nurses, BHF nurses, all have been mentioned. I found an amazing therapist through Anxiety UK the charity. She saw me within 3 days. and getting it off my chest was such a help, so were all the techniques she taught me. My daughter also saw her. This trauma It won't ever disappear completely, but it will be manageable and more distant over time and you can learn not to keep reliving it. That is what has happened for our family. But my son has grasped life and amazed me. The young are quite frankly astonishing. PM me if you like. But continue to use this forum. It will help. Love and best wishes ❤️
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