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Parents of children with congenital heart disease

Bereavement, sources support & reactions of others

Some parents, who discover that their child has a serious heart defect, choose to terminate the pregnancy others opt for withholding treatment allowing their baby to die naturally after birth (for more information (see our site on -Ending a pregnancy for fetal abnormality). Support is available for parents faced with this difficult decision.

Other parents opt for treatment. Sometimes this is unsuccessful and a child dies. The death of a child, usually after months or years of anguish and anxiety, is an overwhelming experience. The parents of the deceased child can feel very isolated in their sorrow. Their friends and acquaintances may feel awkward or embarrassed and not know what to say to them or how to provide support.

One mother, whose son, Luke, died after surgery when he was nearly six years old, describes different people's reactions and explains how important it was to her that people continued to talk to her about him.

 

She describes how people reacted towards her after her son's death and says that it was important...

She describes how people reacted towards her after her son's death and says that it was important...

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Some people have been really insensitive, some people have been sensitive, some people have avoided me, some people have said 'I'm here for you but I don't know what to say'. I know when it was Luke's inquest a couple of weeks ago, a couple of people said '[mother's name] I can't mention it because no matter what I say it's not going to make it any easier for you, but you know where I am'. And then other people want to talk. But I, I know who I can talk to comfortably about it and I talk to those people and Luke's name is always, we talk about him constantly to anybody that will listen to us. We talk about him, which is good.  We talk about him all the time. And hopefully we always will do. And I'd like to think that people can continue to talk to him about me and say 'Can you remember the time?' or 'Do you remember when Luke said, did this?' or 'Can you remember when Luke did that?' or 'Can you remember when you took him to the seaside and he did whatever?'  

People, I want people to talk about Luke. I don't want people just to think 'Oh, he's gone, let's not mention his name'. He's still in my life in a big way and he always will be.

Another mother, whose son, Noah, was in hospital from his birth until he died 4 and a half months later, found it difficult when other mothers from the toddler and baby group in her village seemed to ignore her because they didn't know what to say to her. But at the same time she explains her concern about telling people that her first son had died, because she didn't want to upset them and describes the difficulty she had deciding which National Childbirth Trust class to go to during her second pregnancy.

 

Describes how women she had known when she was pregnant did not know how to talk to her after her...

Describes how women she had known when she was pregnant did not know how to talk to her after her...

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Yes, I went to a mother and baby group in the village where we live and I was still pregnant when I went to the mother and baby group and there was another pregnant lady there as well and lots of women with new-born babies. And you know, they were all saying 'well we'll see you in a few weeks when you have had your baby'. And I saw a few of them afterwards and they didn't, they were really embarrassed and didn't talk to me and just kind of ignored me and that was really hard.  It was hard, generally, because there were a few people who would have seen me pregnant and then not seen me for 4 ' months and seen that I didn't have a child with me. And it was difficult.

 

Describes problem when attending antenatal classes during her second pregnancy after her first...

Describes problem when attending antenatal classes during her second pregnancy after her first...

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But generally the most difficult thing is that all the time in your life you meet people who are asking 'have you got any children?' And then when I was pregnant the second time round people were always saying 'is this your first baby?' and I never wanted to deny that Noah had existed so I have always told people 'no it's not my first, my first son died'.  And that can be difficult because you don't want to upset people but at the same time it doesn't feel right to pretend that you haven't had this child. It's a horrible thing to do.  

So it was really difficult because when I was pregnant for the second time I wanted to go to National Childbirth Trust classes so I rang up about them. And they said 'well, it's a bit difficult because should you go to the one for first time mums or should you go to the one for second time mums?' And they were saying 'for the first time mums we will be talking about labour and all that sort of thing which you know about because you have done it so you probably shouldn't go to those classes. But if you go to the ones for second time mums they will all be talking about their toddlers and how to cope with a baby and a toddler'. So there were times when I felt that I didn't really fit in but again, the Compassionate Friends web site helped with that because I knew that I wasn't the only woman who didn't fit in. And in the end I went to the NCT classes for second time mums and I didn't tell them immediately but we all talked about our first births and how we would like things to be different the second time round and all these sorts of things. And then I think in the second class, people were talking about how they would introduce their new babies to their toddler and it was at that point I had to tell them about Noah. But they were all fine about it really so that was okay, it was a relief to tell them.

Both mothers said they were still a 'mum' even though their child wasn't with them anymore and they found it hard when people talked to them in a way that suggested that they were not mothers.

 

Describes being upset that because her baby had died people did not acknowledge that she had...

Describes being upset that because her baby had died people did not acknowledge that she had...

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I did and I got really upset when people would act as though I didn't know anything about babies or children. Friends who had babies would treat me as though I was a childless woman. And I wanted to say to people, when other friends or relatives had babies, I wanted to say 'oh that happened with Noah or Noah used to do that'. And I could see people squirmed a bit and felt a bit uncomfortable almost like if they didn't want their healthy baby to be compared with this baby that's been in hospital. So that was difficult and I think it was a relief to actively be a mum again because you are not in that awkward situation any more.

The death of their child brings to an end an association with the hospital to which the family have been returning regularly for his treatments, operations or checkups. During this time parents build up close relationships with the cardiac care team. Luke's mother, who had visited the hospital weekly for six years, explained that after her son died she missed the staff, and it felt like another void in her life. Noah's mother commented that after he died she felt very lonely because she had been surrounded by people for four and a half months while her baby was in intensive care.

Both mothers described their feelings about their child's death. Noah's mother said that she did not regret the decision they had made to keep trying with different operations in the hope that her son would get better. Luke's mother recalls that deep down she knew that there was a possibility he might die, but she put those thoughts to the back of her mind. She doesn't blame any of the medical team for her son's death but is grateful to them for giving her six years with Luke.

 

Explains that they don't regret the decision they made to keep trying with different operations...

Explains that they don't regret the decision they made to keep trying with different operations...

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I think afterwards, when he died and people talked to us about it, I think they thought we had been through a really hellish experience and that Noah had had a terrible, terrible life in hospital. And, you know, he did have to have a lot of things done to him, he had a tracheotomy and he was always having lines put into his veins and three lots of open heart surgery. And I think people thought he had a terrible life and, you know, it was really sad and we were really sad parents. But we don't look back and remember them as really bad days. We look back and we remember them with a lot of warmth because he was our baby and we spent 4 ' months with him and the nurses and doctors and surgeons were all very loving and caring for the most part. They were fantastic. So I wouldn't say that we ever regretted it. There were times when I thought would it have been better if we had just come home the day he was born and he'd have probably have passed away in his sleep or something. There were times when I thought would that have been better because he wouldn't have had to go through all the surgery. But in actual fact we would never have got to know him or got to see him smile or anything like that so I think we did what we thought was right at the time. 

 

Reflects that she didn't blame the surgeon when her child died after surgery but is thankful to...

Reflects that she didn't blame the surgeon when her child died after surgery but is thankful to...

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We then got the post-mortem results that revealed that the surgeon had done nothing wrong at all in any of Luke's operations, everything had been carried out perfectly normally and the reason that Luke died was that Luke's little body couldn't take the operation, it was just too much for him. So that was a relief but throughout, even before I knew I didn't blame the surgeon and I still don't. It's like without the surgeon, the consultant, Luke would have died within a couple of weeks of being born. So I see it that the surgeon and the consultant, they gave me nearly 6 years with Luke, not that they've took, took him away now. Yeah, I've lost Luke and it's, it's horrendous without him but I've got such good memories of those 6 years with Luke. There's been a lot of sad ones within that time when Luke's been really ill, but we've got some, some great memories of the time that we did have with Luke.

 

 

Whole families are affected when a child dies. Luke's mum describes the impact her son's death had on his grandparents, uncles, aunts and little cousins. Noah's mum describes the impact his death had on his grandparents when subsequent children were born in the family.

 

Explains how family, friends and acquaintances have been affected by her son's death.

Explains how family, friends and acquaintances have been affected by her son's death.

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Mum and Dad have took Luke's death very bad. They're just like I am absolutely distraught. And it doesn't seem to be getting any easier after all this time. People say time's a great healer, I don't know how long this time scale is. It's not, it's not getting any easier. Mum and Dad have been really affected by it as my brothers, my brothers have both got two healthy children each, they've been affected. And my sister-in-laws have and Luke's little cousins, even the littlest of them still talks about Luke and sort of, you know, 'Why couldn't the doctors make Luke better?'  

We always believed that the doctors could make Luke better. So it's not only affected me, it's affected everybody who was in touch with Luke's life. And a lot of people when Luke first died who knew a friend of a friend of a friend came to see me or sent me a letter or sent me a card. 'We've heard such a lot about this brave little boy, we're devastated'. Which was really touching that strangers were saying such pleasant things about Luke. That was very, so he's touched everybody.

 

Describes the impact Noah's death had on his grandparents when subsequent children were born in...

Describes the impact Noah's death had on his grandparents when subsequent children were born in...

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It was very hard, I think it was very hard for everyone because our families were worried as well that something was going to go wrong. I know for Sam's parents had 2 other grandchildren between Noah and Alfie being born and when those 2 girls were born they were really worried, especially the grandchild that was born after Noah, the first one. They were petrified that something was going to go wrong again. And I think my Mum was the same when I was pregnant with Alfie. The second time she was really worried and my Dad, a week after he was born rang up in a huge panic and asked me had I got a monitor for his cot to check that he was breathing. So it affected everybody.

There are various sources of support to help parents who have lost a child. Luke's mother had found the Child Death Helpline useful when she needed support but hadn't found the first bereavement counsellor she saw helpful. She had however found monthly visits to her GP supportive and was also planning to attend a day for bereaved parents organised by the hospital.

 

Describes using the Child Death Help Line.

Describes using the Child Death Help Line.

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The Child Death Help Line and the Elder Centre at Liverpool have been helpful. I think the hospital gave me a leaflet about them and I rang one night when I was in a bit of a state, on their help line and all the people who work on the help line are bereaved parents themselves so although they don't know what you're exactly feeling they are, or have been along those lines somewhere in the past. That was very helpful. I've only rang them the once but I also got put on their mailing list so, I think it's about every 6 weeks I get a newsletter from them. And it's just nice to know that you're not on your own in this situation. There's a chance for you to put poems and photographs, stories, just a couple of words if you like. So hopefully come the summer Luke's first anniversary of his death is the 1st July. His birthday's the 25th July, so we've got two anniversaries very close together. So hopefully we're going to put something in the newsletter for Luke's first anniversary, although we've already had his first birthday without him. 

 

Luke's mum described how her son's school reacted when he died and comments that they had been a great support for her.

 

Describes how her son's school reacted when he died.

Describes how her son's school reacted when he died.

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I'd phoned the care lady, Luke's one-to-one helper. She was my point of contact when Luke was poorly and she let all the other staff at school know what was going on. So I'd phoned her to say that Luke had had his operation but he was very poorly and then after Luke died I phoned and told her that Luke had died. She let all the staff know, she was absolutely distraught. She'd become very fond of Luke. She was like the third child of hers. Luke was like her third child. 

She went to school the next morning and obviously all the staff knew and the head of the 4+ unit which is where Luke was, he was repeating his first year at school, she had to break the news to the parents waiting to take the children into school that, that, and she said it was the hardest thing she'd ever had to do and she was very distraught. School was very supportive, both to Luke while Luke was alive and to me since.  

The headmaster has been astounding, he's been brilliant. He spent all, all of the next day in the 4+ unit with the children and the children was given the opportunity in groups to say whatever they wanted to say and, about, some children said they were upset and they wished that Luke didn't have a poorly heart and 'Oh he's with Jesus, he's safe now, he won't be poorly anymore'. And one little girl stood up and said 'I'm really upset that Luke's died'. So the teacher said 'Well we are all are'. And she said 'Yes but I am because I was going to his birthday party, and now he won't be having one, will he?' And the teacher told me and she said 'I don't know whether to tell you this or not' she said 'but I will do'. And when she told me we just laughed and it was like, crying and laughing at the same time because it was so sweet what she'd said but children, yeah, they was really distraught. 

School was brilliant, they had school nurse brought a teddy bear and all the children the teddy bear was placed on a special table for Luke and for the period between Luke's death and his funeral the children could go to the teddy bear and they spoke to the teddy bear and they said messages which the children think the teddy bear was given to Luke. The teddy bear's actually sitting on my living room floor, I couldn't bear for it to go. But they called it 'Luke Bear'.

There was a school disco, which they wanted to cancel and I said 'No, the children should continue as normal as possible'. So Luke Bear went to the disco and he sat on top of one of the speakers.  But the children gave their messages that was then passed on by the teddy bear to Luke and I think that helped.

The school nurse was present for a, a number of days as well in case the children, although they were only 4, 5 year old's they was very attached to Luke. And even now the kids say 'Oh look, there's Luke's mummy' or, and some of the children I know visit his grave, some of them take him flowers and they do, they still talk about Luke which I like.

School have been brilliant, they doing a bench in memory of Luke in the playground and we're going to plant a tree, but we'll wait until springtime before we do that. They've been very good.

 

Noah's mother had got in contact with Compassionate Friends, a website for bereaved parents. She had been able to email other bereaved parents, which had helped her to feel that she was not alone.

 

She had emailed other bereaved parents through the Compassionate Friends website, which had...

She had emailed other bereaved parents through the Compassionate Friends website, which had...

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We hadn't lived here for very long before I had Noah so I felt quite lonely. Sam went to work and I felt that I was supposed to just get on with life and maybe I should start looking for a job but I didn't really feel ready to look for a job. So I had a few months of feeling really lonely but I got in touch with other people whose, whose children had died on a web site for, for parents who had lost who've lost children in lots of different ways. So I spent quite a lot of time e-mailing other parents and that was quite useful because you didn't feel so lonely then. You knew that you weren't the only person in the whole world who'd been through that.

How did you find that web site?

I can't remember now but I think somebody must have told me about it.

Can you remember what it is called?  It might be useful for other people.

Yes, it's Compassionate Friends is the web-site and lots of parents whose children have died in all different circumstances, they can write a little bit on the web-site and then they can e-mail other parents who have had similar experiences. And I am still in touch with quite a few people. And that was useful also when I got pregnant again, the second time because I was in touch with a few other women who'd lost babies and then gone on to have other babies so we could talk about how we felt. And they could say how they felt after their second child was born because we didn't know how we would feel and we were quite scared and everything. So that was really useful and it was useful because sometimes you're not sure you actually want to pick up the phone and talk to somebody and you can control it yourself if you are e-mailing somebody. You don't have to listen to them; you don't have to reply there and then. So it is quite a nice way of doing it.


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Last reviewed July 2018.

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