My son (aged 11) died from a very sudden asthma attack last year. He was not severly asthmatic, and we seemed to be managing his asthma OK. He had never had an urgent attack before and the worst he had ever been was mildly wheezy. He had a very busy active normal life, although he would carry a Ventolin inhaler around with him and used it every so often. However, he had been mildly wheezy more often in the few weeks preceding his death and had had a short course of oral steroids. This made him completely better and he was very well for a couple of weeks, with no wheeziness at all, and we were just using the normal doses of beclomethasone/sameterol inhalers morning and evening. I would not have known that he had asthma. Then one day he just died in an asthma attack that only lasted a few minutes.
I am having great difficulty accepting what has happened which really does not seem to make any sense to me. And I am feeling so guilty that this condition that we lived with for the whole of his life and I never for a moment considered life-threatening, actually killed him. I feel as though I should have done so much more.
I was wondering if anyone else has suffered such a loss, and if so, whether you could contact me. I think we might be able to give each other some support.
Am so sad to hear about your loss. Sadly I do talk to people all too frequently who have been bereaved by asthma and have the same questions as you. Several people who have lost loved ones to asthma have been in touch with me about the possibility of setting up a support group and we are hoping to organise a get-together to discuss the possibility. I am sure some of those individuals will respond to you directly and I will let people know about your post.
The East of England is the only NHS region we know of that conducts an annual enquiry into asthma deaths. In the last enquiry, it showed that the majority of people who died were being managed wholly within primary care and had not previously been hospitalised for asthma. These are probably the hardest deaths to prevent but we are investing in research exploring why asthma attacks are so serious for some people, and hope that so-called 'phenotype' approaches will in future help identify people who are at risk.
I think there are other practical things we can do, such as offering advice to siblings of those who have died who also have asthma and are worried about the future. None of this takes away your loss or answers your questions but if there are things we can do to help you, or others, please do say and we will do our very best to make them happen.
Dear Sue
My family has experienced something very similar six years ago and everything you have written rings true for me too. If you want to get in touch, please PM (personal message) me. I would have sent you a PM but I don't think you have activated that in your forum profile,
Sorry to hear about your loss. We all think it will never happen to us. I have had asthma since i was 6 (NOW 50), last 6 months not been good, Hopefully some day we will get a cure for asthma as im sure many asthmatics children also suffer from it. This is a great website and we must keep supporting it as they always offer great advice.
Sue I could not read and run. I read about a child aged 11 who died recently thought I'm guessing this was not your child.
Although I have not lost my child to asthma like you, I have a daughter with asthma and another respiratory condition which may or may not be related. We have nearly lost her on more than one ocassion, and spent weeks in Great Ormond Street hospital on life support. She's had extensive surgery to her trachea and she is vulnerable. Despite this knowledge, I can not be sure I would have any warning before she became critical again, or her condition became fatal. Prior to her becoming critical she was a time bomb, without our knowing, and it was sheer luck she got to GOSH just in time.
What I'm trying to say is it is important you work hard on not blaming yourself. Asthma is an umbrella diagnostic term for symptoms that can be caused by a multitude of things, only some of which are partially understood. You do not know what happened to your child, and it is too dreadful what has happened, but it is not your fault.
I think you are very brave to write your story here and ask for help. My heart goes out to you.
Hi Sue,
Im really sorry to hear about your loss, I cna ony imagine the devastation you must be going through, but this isnt your fault. My son has fairly mild asthma and it can be difficult to manage as its easy to forget they even have asthma if they have it rarely.
I dont think we expect asthma to be sooo serious and life threatning as we often are able to keep it under control. Although, when it comes to breathing difficulties I suppose its understandable that if someone has a bad attack it can be fatal.
I hope that are able to cope with your loss and some people who have been through the same experince can offer you the support you need.
Lisa
Im so sorry x
This really scares me, i worry all the time about my son! Hes 18mths old and has had 4 attacks now everytime ending up in hospital!
When i tell people hes having asthma attacks they don't see the seriousness of it and reading your post just really brings it home how awful asthma really is!
I can't imagine what you are going through! But have found this site brillaint for advice and support tc and my thoughts are with you hun!
Becky and Dennis 18mths
I am so very sorry
your post has helped me so much, you have given me a huge kick up thr bottom and made me realise just how tragic asthma can be
thank you for sharing your tragic news,
my son is 9 years old, and has had asthma since he was 2, he has been in and out of hospital
athough lately like your child, he has been really good,
saying that, for 2 months he has been really off colour pale and unwell, tired too....the Dr did blood tests to rule out other complications, and came up with the idea that my boys poorly spell was due to his immune system having a battering.....anyway last week he was ill again, this time I saw a different Dr....after listening to my concerns she then listened to Toms chest...and basically said his asthma is causing this!
Tom only needed inhalers for the last 3 years when he has had a viral infection.
so after 4 days of steroids and his inhalers morning noon and night, and brown inhalers morning and night what a difference
I want to say I am so sorry for your loss, and thank you for posting your thread, your thread has woken me up, and now I am never going to push aside symptoms that dont even seem like asthma syptoms.....2 months my boy has struggled, and I didnt even realise it was his asthma.
I almost lost my son
Im so sorry, i sitting here in tears reading your post. I almost lost my son to asthma last year when he was only 1. That was a bad enough experience to go through. my heart truly goes out to you. Im worried sick every time my son get's ill as it's the only time it triggers he's asthma. I always try to be aware now. I can totally understand where you are coming from. It sounds so strange how it just happenend like that. Maybe try talking to your asthma community nurse, or even a consultant about it if you feel you want answers. Stay strong.x
Hi Sue,
You have my deepest sympathies, but you really mustn't blame yourself. There appears to be no way of totally understanding asthma, even the GP and Asthma nurse can't answer questions I raise, so you really are not to blame in anyway, I know it's hard to accept this as a parent, but unfortunately the milder cases of asthma are the ones that seem to have the highest mortality rate as Neil below has said, when I was a child at school i never thought asthma was that serious, until I developed it and learnt more. I guess the mortality rate in milder cases is down to the fact that it appears to be mild, easily managed, and very few symptoms that usually easily clear up, the GP will not be concerned, but things can and do all to frequently take a rapid downward spiral, and result in the loss of loved ones. Nothing anyone can say or do will take away your pain, but remember, you did everything you possibly could.
Chris
Hi Sue
Sorry for your loss.
I to lost someone to asthma. My sister had terrible asthma for many many years and it was awful. She passed away at the age of 29.
I'm here if you want to talk and so to is my mum who like yourself lost her child.
Liz xx
Hi Sue,
Sorry for your loss.
Although I haven't lost anyone myself to asthma, I have brittle asthma and have (over the last two years) been close to the brink myself on a few occasions, and seeing the effect that this has had on my Wife, May, and my 88 year old Mother. Wrongly, they feel guilty that they can't do more to help, and don't realise the comfort they give just by their being with me.
So please don't blame yourself, blame the asthma, and always remember that you have friends here.
Kindest regards,
John
Hi Sue we have chatted before.So sorry for your loss it must be hard for you.Its hard seeing children go through alot and as your child did sadley did not make it.By helping others and wise words about asthma you will help so many people to take notice and make sure they push for help when needed.my 2 sons and husband are epileptic and seeing them in a seizure is heartbreaking also.you need time to grieve and cherish all your good times and memories and some how you will have a little comfort in knowing you are hear to help us to.Welcome to chat to me anytime and would be glad to hear from you and how you are keeping.Lots and lots of love from Glynis xxx
glynisharbron@googlemail.com
Just reminding you Sue,dont feel alone and will always have time for you,Its good to talk and remember and someone to listen ,Other than family.So lots and lots of love coming your way and Hugs .
Remember what I said about FaceBook. Put a pic of your son on and let everyone know they can contact you through it.My friend had lots of stories from all his school friends and family, she would have never known about the funny stories and helps keep his memory going.friends put more pics on of him.Its was the best thing she did,wasnot sure at first but now realy glad she did .
Again lots of love from Glynis xxxxx
I was really sad to read this, I had a visit to my local resussitation unit earlier this year after acute asthma/anaphylaxis so makes me realise how lucky I am. Most of the time I have minimal symptoms and lead an active life. Things went downhill asthma/allergy wise for me after a couple of colds and then chest infection whilst being down with flu.
Please don't feel guilty, it's obvious you were doing all you could to manage your son's condition. However I feel guilty for ending up in hospital, for worrying my partner, family and friends, I'm having to ask work for help and make adjustments before I return which isn't proving easy and I feel bad for being off and 'kicking up a fuss' to ask this.
I saw a Specialist team the other day and told them I didn't think I was managing my condition properly, they said I'm doing everything I can, as did the hospital when I was admitted. My Mum also feels she has done something wrong when bringing me up - she hasn't.
Unfortunately no matter what we do, the sad fact is that this can happen with asthma, particularly sad when it happens to someone so young. You must miss him so much but treasure your happy memories and take comfort that he managed to lead an active life.
All the best
Lucy
May I too, pass on my condolences to all who may have lost a loved one to asthma.
GrannyMo xx
Not direct response to post but to topic
A colleague and friend of mine has died just this week of asthma and a collapsed lung, it has hit me so hard. It is so close to home for me and due to the upset of it all is upsetting my asthma. I am also not really sleeping at the moment but this shall return with time. I needed to post this but know it needed to go in a death place due to it being of a sensitive nature. It is so hard to lose someone let alone lose it due to a condition you have and have had in the past.
I'm very sorry to hear about your friend, Plumie. It's awful to lose someone you know well but when it's to a condition which also afflicts you, there's an added dimension of awfulness, especially as so many people seem unaware of this possibility and assume there's not much to be worried about.
I hope you're managing ok, remember theres's support and friendship here for you.
So sorry Plumie.
Such an awful thing to happen - we're here if you need us.
Feejay
hi
hi sue so sorry to hear of your loss, my daughter Kiera passed away of acute asthma attack on the 3rd of september aged 11. It happened during the night no warning very sudden and unexpected, i dont understand why? she had asthma since the age of two also exzema and allergies. she used three inhalers ventoline, becotide and serevent and also took singulair tablets.I would describe her asthma as mild moderate, she had r s v puemonia etc when she was younger, chest infections and courses of steroids. GENERALLY as she got older her asthma improved , Kiera was just starting to go through puberty and when i think now was coughing more at night but wasnt complaining of being unwell, infact the night before she died she had been at dance classes and had been bouncing on our trampoline. HER ASTHMA DIDNT stop her doing things she wanted though she was petite and bit small for her age. As a family we are struggling to come to terms with her death her younger sister and her were very close. I blame myself should have knew got up for her she often came into my room said she couldnt breathe but took her inhalers and was fine she came into bedroom that night and told her the same mins later she was gone. I miss her like you must miss your son how do we get through the pain and grief?
I am so sorry to hear of your loss, my heart goes out to you. Thinking of you. xxx
Aileen, as a mother my heart goes out to you and all who lose a child. A big hug @
The idea of a support group sounds like a good idea as the people who understand the most how you feel is best understood by someone who has been through the same as you.
If anyone wants to set up a support group or knows of one please would you let me know - thanks
I almost lost my son
Firstly my heart goes out to all and everyone who have lost a child, family member, friend or work colleague because of asthma and things linked to asthma
As the title says I almost my son when he was only 18 months old. I took him in the morning to see our GP (who is no longer our GP) as I was having to give him puff after puff of his ventolin, he was coughing constantly, wheezing really load and was not himself at all. He said to continue what I was doing as all he had was a virus. He always said my son had a virus. I know different so I took him home did everything he told me to do for a few more hours then rang back up and said he is getting worse he is changing colour. All I got from the doctor again was I said early he has a virus he will change colour he will go really pale and could end up looking just like we describe as a ghost or zombie. I oput the phone down rang his dad and told him what was happening and what the doctor had said and he said no way. Ring 999 and I will meet you at children's A&E ASAP. I did this and they came out took 1 look at him and one paramedic grabbed his changing bag off the sofa, the other grab my son and told me to meet them at the ambulance once the house was locked up. As soon as I sat in the ambulance we was gone, serions and lights. My sons sats was down to 75% and they put him straight on O2 and neb while on route and once we got to the hospital they took us straight through to resus where they put him on yet another neb followed by o2, steroid injection and anti-bio drip. My poor baby boy had a chest infection and his airway ended up being blocked with the mucus as he couldn't cough or sick it up. They ended up using one of this suction things down his throat to get as much of the mucus of his chest as they could. Thankfully because of the quick response of both paramedics and doctors at the hospital my son survived but the GP know it the net day when my hubby went in and had a right talking to the doctor and told him we was going to see him in court for child medical negligent as our son if we didn't listen to our instincts would not have survived that chest infection. The doctor settled out of court and the money was used on our son to buy him a brand new big boy bed and allergy bedding and we changed GP's.
Aileen Alex.Sorry for your loss at this devastating time. My heart goes out to you and hugs. Love Glynis x
I am so sorry for your loss and hope you find some peace. You are in my thoughts x
Hi Aileen Alex,
I'm so very sorry so hear this and have sent you a pm.
Thinking of all of you who have lost someone you love, I am heartbroken to read these stories. My son has been in hospital twice in in the last five weeks, it is frightening when you are reminded how serious asthma really is and we must all remember this!
I am so sorry to have read this message, my thoughts and prayers are with you and your family.
My heart goes out to all those people who have lost a loved one through asthma
i'm very sorry to hear about your loss.
2 years ago i lost my 5 cousin very suddenly from an asthma attack, we never saw it coming and like your son, her asthma was very well controlled.
it was a huge shock to the whole family, we never really thought she'd be the one we lost first, if anything we thought we'd loose her sister first, who was asthmatic but also had Systic-Fybrosis. Since then alot has happened, i'm only 15 but had to grow up alot when things got really bad.
we all stuck together as a family and some days were deffinately harder than other, on her birthday each year we go out together to remember her in a possitive way. balloons are let off for her on both her birthday and aniversarie of her death.
i think the main thing with a tradgedy like this is being able to remember things in a possitive way, things will start to look up, and i hope that things get easier.
if you have a supportive family it deffinately helps.
i wish you every success for the future
Hi Sue,I am so sorry for your loss,I can't think of anything worse than losing a child and my heart go's out to you.I lost my mum 22 years ago from an asthma attack,one day her ventolin just didnt work,she called my teenage brother,who was at home, but by the time he got to her she was in serious trouble and died before the ambulance arrived.it was so awful .my brother blamed himself and turned to drink,it took years to get his life back on track.We took asthma for granted,she had told my nan that she;d had a couple of times where her inhaler hadnt worked and she was a bit concerned about it, but not enough to go to gp.This asthma is just unpredictable ,so please,please, dont blame yourself,I hpoe you find peace soon,Franx
Just to clarify, the original post by Sue Hughes is dated 14.9.09. My profound sympathies to Sue.
It was added to by AileenAlex on 28 Oct 10 telling us her daughter Kiera (11) died last month (3 Sept). It is awful to hear of these tragedies and my heart goes out to these mothers and families.
i have just spoken to Aileen on the phone, and her story is similar to mine and the many other parents we have now discovered who have lost children to asthma.
These deaths have mainly been in children aged 8-12, who have not been signalled as high risk. They were ordinary kids who had asthma and were on some preventive inhalers - they all seem to have been on becotide and salmeterol inhalers twice daily with Ventolin as required. All under GP care, which has not been good. No one medical has ever suggested that there was any risk of death or even a bad attack, and we have all been left feeling extremely let down by the medical profession.
No-one seems to care that kids are dying. and kids that actaully are supposed to be fine. No-one has spoken to us about good proactive preventative treatment. That is criminal. I fundamentally believe that if the medical profession took this disease more seriously and each of us was given proper advice as to how to manage asthma, these deaths coudl be reduced. It is not an expensive exercise. Every parent wants to do their best for their child. But none of us were aware that we should have been doing anything different. That is not our fault. It is the medical profession's fault. They are guilty of letting these kids die without the best care. It is a huge scandal, that desperatley needs to be addressed.
All i can stress is to those parents who have kids with asthma, MAKE A FUSS about it. Do not be fobbed off by your GP that you don't have to worry about it. make sure you have regular reviews and have an action plan, and if your children are still regularly symptomatic, push for better care, and to see a specialist. They know how to treat this disease. GPs do not.
I feel your pain Parents.
You know your child so make a fuss if necessary you can always apologise to medical staff/gp if you over reacted but you can't replace a life. Asthma when it goes wrong can be very devastating. I suffer from severe asthma and I have experienced when it can go wrong/right.
So I tell the doctors exactly that cause if they fail to act I pay for it, my family suffer and others are dazed. I came for help, once thats acheieved I will be happy to go on my merry way. Lets do all to reduce these deaths.
I can't believe another child died.
gill
Gill - I completely understand what you are saying, but we did not have the knowledge that you have. My Joe and most of the other kids that died suddenly aged 9, 10, or 11, had never had a bad attack. We did not realise that this was a possibility. When you live with a condition, you get used to it and you find ways of mangaging it. That's what we were all doing. We did not expect that condition to suddenly change and cause a fatal attack. I did not know that coudl happen. EVERYONE NEEDS TO UNDERSTAND THAT THIS IS A POSSIBILITY, and that even if a child has never had a bad attack before, any increase in symptoms needs to be taken EXTREMELY SERIOUSLY. I was dismissed by many doctors when I took Joe in because they said it wasn't serious enough to justify making a fuss. Well he's dead now. Is that serious enough? I was fobbed off. I believed them. I let them lull me into a false sense of security. i am warning all parents of asthmatic children not to fall into the same trap. YOU MUST WORRY ABOUT ASTHMA, EVEN IF THEY HAVE NEVER HAD A BAD ATTACK. THEY COULD STILL HAVE ONE. DO EVERYTHING POSSIBLE TO PREVENT IT. IF your child has allergies, they are at higher risk of a sudden fatal attack. Few people seem to know this. I know I didn't, although Joe didn't have allergies to my knowledge. As Gill says, do not be afraid to make a fuss.
I am so sorry to hear of your loss, my heart goes out to you too Sue. X
What is it going to take to wake up the GP`s - if only this topic could be sent to them all.
The problem with a sudden attack is that it is just that - sudden. It's virtually impossible to predict that it will happen, and if it is serious enough then there is sometimes little that can be done. The very nature of any condition where a major exacerbation can be life threatening is that there is often no warning that a major attack is about to occur; this is not exclusive to asthma - heart conditions that strike children often have remained undetected for years because the child seemed perfectly ""normal"" and there was no reason to investigate, for example.
Steve
(in his ""official Asthma UK message"" capacity!)
Yes, I understand that Steve, but in our case Joe had been more wheezy than usual in the months before his death. Not severely wheezy, but I just noticed he was usiang his inhaler more, and at one point we took him up to A &E because he had had quite a lot of ventolin that day an was still wheezy. They gave him 3 days of oral steroids and he got completely better, but no-one spoke to us about increasing the steroid inhaler over the next few weeks/months, as a preventative approach. As a result he was only on the normal dose when he fell down dead 3 weeks later. I have heard of several other cases as well where children have died suddenly a few weeks after an exacerbation. Doctors and parents and anyone with asthma need to understand that just because the exacerbation has now calmed down and the patient appears fine, this is a time of increased risk, where preventative treatment should be maximized. If you know that, you can make sure you ask about it and push for it. If you don't know that, as I didn't, and nobody tells you, then you have missed an opportnity to reduce the risk of a bad attack.
I'm sorry if I am scaring people. It's just i wish someone had scared me.
We don't know when the fatal car accident is going to happen either, but we all wear seat belts and are advised to drive within the speed limit to minimize these occurences. And we don't get ourselves into a panic every time we get in the car. We take the necessary precautions and get on with it. i don't think everything is being done, by any means, to minimize the risk of these fatal asthma attacks. All I am saying is make sure everyone is armed with the correct advice. This is not being done at the moment.
Sue
Sue my son is now 8 and on the medication your son was on. I have asthma action plan for him and always have. Weather that is because I am asthmatic myself so demanded one was made for him I don't know. But I have always looked as asthma as a possible killer because it is the breathing. Common-sense tells you if someone can't breathe properly then they could die as you are starving them of oxygen. My son is always having sudden attacks and so far has only resulted 4 times in me having to call 999 for him. I am interested in hearing what doctors told you all to do when your child was in asthma attack and when to dial 999 for the attack. My son know has to take 2 puffs when the attack starts followed by 1 puff every minute for 5 minutes when he then has 5 puffs followed by another 1 puff every minute for a further 2 minutes. Then after 7 minutes it's 999 followed by another 5 puffs and then 2 puffs every minutes until the paramedic gets to him and they take over with nebulisers and oxygen.
Sue - your message is loud and clear. And I feel privaliged that you let us into your life and are here talking to us about it. I get extremely nervy and over-protective the second my lad's asthma flares up and I'm a bit of a pain in the ass mum who goes back to the docs all the time and I ring nhs direct just to be on the safe side. And it is all because of your post that I read last year. I also studied asthma at uni and it stayed with me. I was working as a care assistant part time at the time and nowhere in my training had anyone ever explained to me that it was could kill someone. I think sometimes that when something's common that it's easy to become de-sensitised to it. My Dad has angina and people have a similar attitude. The situations that I find the hardest are convincing my other half's family. They have a bit of a blase ""he's alright"" attitude. I think they think I'm being awkward that I don't want to stay at their house (they have a cat) for visits and Christmas. But I will stand my ground and will think of you when I do so. xxxx
Wheels, maybe if more of us were more awkward especially when dealing with GP`s and Asthma nurses who don`t take our asthma as seriously as they should, they might sit up and take more notice.
Until now I have been very quiet about the mismanagement of my asthma but as a result of all that I have read here I am going to make my displeasure known when I see my asthma nurse in November, I might even suggest that she reads these posts too and passes on to the GP`s what she has learnt.
Who knows it just might make a difference and help those with asthma in my area.
Sue - don't worry about scaring people; it's an important message to get across, and far too many people don't realise how dangerous asthma can be.
My son Jesse was diagnosed with asthma when he was an infant. He hadnt had an attack in about 2 year. On October 10, 2011 four days after his 5th birthday, he passed away from what the coroner concluded as an asthma attack. The coroner took six months and went through all Jesses medical records. He could not find the cause of Jesses death. Finally he asked me if Jesse had asthma and I told him Yes. Jesse passed peacefully in his sleep. I too find comfort in the fact that he did not suffer, however, I do not believe he had an asthma attack without any signs at all. He was at daycare at the time of his death. For me I feel that my sons autopsy did not have enough effort put in to find the exact cause of death. The daycare lady stated that Jesse woke up a couple times asking for water and fell back asleep, the only odd thing she noticed was him snoring.
When Jesse use to have his asthma it was severe coughing attacks that would cause vomiting at night and he was on albuteral and polmacort nebulizer treatments. He would also pass out if he got hurt or frighted which was not normal. I would take him to the doctor or ER and they would just tell me he was purposely holding his breath. I feel they did not look into this situation properly because we were on medi-cal.
I have 4 other children and am scared that Jesse died from an unknow cause that may affect my other children.
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