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...
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 problem when attending antenatal classes during her second pregnancy after her first...
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...
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...
Reflects that she didn't blame the surgeon when her child died after surgery but is thankful to...
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.
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...
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.
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.
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...
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.
Last reviewed July 2018.