Parents of children with congenital heart disease

Signs, symptoms & diagnosis after birth of congenital heart disease

Congenital heart disease is one of the most common types of birth defect, affecting up to 8 in every 1,000 babies born in the UK. (NHS Choices 2018).

Some parents know during pregnancy that their baby has a heart condition. In some cases, the diagnosis is made at birth and in others it is discovered some time later. Occasionally, congenital heart defects are not picked up until a child is older.

Signs of congenital heart disease in babies and children include heart murmurs, rapid heartbeat, rapid breathing and blueness (cyanosis), excessive sweating; older children may complain of extreme tiredness, dizziness or fainting. Some babies with congenital heart disease have trouble feeding which can be due to tiredness and rapid breathing and this can lead to poor weight gain.

Some parents discovered their baby had a heart condition while in hospital after birth. One baby's complex heart problem was discovered during his routine discharge examination. Another couple, whose baby had blue lips, was a bit listless and was not gaining weight, discovered five days after birth that he had a heart murmur. Tests revealed an atrio-ventricular septal defect (AVSD), which would need surgery within a few months.

Their baby's serious heart condition was discovered during his routine discharge examination.

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Age at interview: 5

Sex: Male

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Mother' Well unfortunately nothing was ever picked up during pregnancy, so we didn't know about him until after he was he born and it was on the day that we due to come home that they'd done a final hip and heart check. They heard that he had a murmur and they wanted to do an x-ray before they sent us home. And when they'd done the x-ray, they found out there was more than just a murmur, so we got sent back to the room and they'd done continual tests. They wouldn't tell us anything. They just keep taking him away for test after test and that went on for about 3 days until they finally come in and try to explain to us what was wrong with him.

Yes it was a normal pregnancy check-ups were all regular, they were all fine, [our son] was two weeks overdue and that was it basically, nothing was ever picked up and it wasn't even picked up on the day he was born because there wasn't a paediatrician in theatre. So it was on the day that we were due to come out, we had him all wrapped up in a shawl.

And during those few days before you did come out, before he started having the tests, was he showing any symptoms?

Mother' He was slightly blue but we just, we thought he was cold so he kept getting wrapped up but obviously, he wasn't. So that was that.

Father' Your mother, your mother thought he's breathing was a bit unusually, [M' Hm, hm] and we didn't pick up on that. [M' No] We just thought oh he's fine, he's fine, you know but [Mother' Apparently he wasn't], No.

Another mother said that her baby didn't cry, slept a lot, didn't feed and was a burgundy colour for 24 hours after birth. An ECG and chest X-ray at the maternity hospital showed problems with her baby's heart. He was then transferred by ambulance to the specialist hospital where a heart scan revealed a complex heart condition requiring emergency surgery.

Several parents did not discover that their baby had a heart condition until they were at home, several weeks or months after birth. One couple explain that their baby had no symptoms, and it was only at his routine six-week check up that the GP noticed a loud heart murmur and referred them immediately to the hospital.

Their GP noticed a loud heart murmur at his routine six week check-up. They were referred to the...

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Age at interview: 3

Sex: Male

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Mother' You know, a perfectly normally pregnancy, shot out in six hours, which compared to his brother was very quick, and I mean, I always come home the same day but you made me stay in, [Father' Hmm] Just to make sure everything was ok. And when the paediatrician looked at him in the morning, when he was like one day old, they said that he felt a bit cold. But I thought it cold in the ward and just didn't think about it again and went home. And then he was absolutely fine, wasn't he? [Father' Yep] Breast-fed and put on 2 1/2 pounds and we took him to our GP, expecting the GP to say, you know, 'isn't he wonderful' whatever, and well you remember, what [Father' Hmm] what he did. Do you want to say that bit?

Father' Well only the fact that he, when he checked, checked his heart beat, you know, with the stethoscope, he did say, 'Did the hospital say anything to you?' you know, we said no, the paediatrician looked at him and said home you go. And he said, well I think there's a bit of a problem here. He said, there's a murmur on Toby's heart, he said it's probably the loudest one I've ever heard and he said really, you need to go and see a specialist quickly, you know.

One mother recalled that when she put her head on her baby's chest she could hear the heart beating hard and after having a 24-hour electrocardiogram when he was 3 months old, he was diagnosed as having hypertrophic cardiomyopathy.

Some parents who had been concerned about their baby's symptoms, for example, feeding problems, breathing problems and poor weight gain, had taken their child to their GP. They were referred quickly to the specialist hospital where various tests, such as an electrocardiogram, chest X-ray or echocardiogram were done, and they were told their baby's diagnosis.

Others found it difficult to get their health visitor or GP to take their concerns seriously. In some cases, by the time the baby was referred to the specialist hospital their symptoms had become severe and they were dangerously ill. One mother describes the concerns she had about her baby's feeding and poor weight gain and how for five weeks the health visitor told her she was an anxious mother. When she insisted on seeing the GP, he immediately recognised that something was wrong and referred her baby to the hospital where she was told that they were only just in time to save her life.

For 5 weeks the health visitor told her she was being over anxious about her baby's symptoms. She...

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Age at interview: 3

Sex: Male

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Alex was born due to a normal delivery. She was a normal weight and she was to all intents and purposes normal. She fed well and put on weight for the first two or three weeks of life and then she started to have problems feeding I was breast feeding at the time and I knew that there was something wrong.

Health Visitors and, and midwives didn't really pick up on it and felt that I was just having trouble breast-feeding. One day I decided, after she'd failed to put on weight, for one week, about the third week of life, I decided to bottle feed because I was worried that she was not feeding. I tried her bottle-feeding and she continued not to put on weight but now I could see measurable differences because I knew she wasn't getting the milk.

My Health Visitor said that it was because it was hot weather and things like that and not to worry. So I left it a further week. Towards the fifth week I was worried because she still hadn't put any more weight on from two weeks old. In fact she'd lost and I was very worried about this. So I took her to see the GP at 5 weeks old and my GP looked at her briefly, made a phone call to the hospital, sent me immediately up to the hospital and said that she could have a heart problem.

OK, so going back to when your daughter had symptoms, were there any other symptoms apart from the not feeding well?

Although, thinking about it and looking back, she had cold hands and feet and I pointed this out and people sort of said 'Oh, an anxious mother'. She's, they, they, that what I was called at the time. I'm an anxious mother, don't worry about it too much. She had cold hands and feet which I suppose a lot of babies do that don't have heart conditions. A lot of babies that have feeding problems don't have heart conditions but I knew when I went to the hospital the one common symptom was the feeding problems. All the babies had feeding problems. But she had no other symptoms. Perhaps her chest was dipping a little bit but I wouldn't really have noticed that because this was my first baby and I didn't know what the chests of babies looked like.

But no other horrendous symptoms. No. But she was very, very seriously ill. And the surgeon said that we had less than 48 hours in which to save her life. So we didn't have that much to go on, so it was a massive shock, a massive shock.

Another mother who sought advice from her GP about her baby's colour and breathing when he was 11 days old was told that 'he just had a cold and to go home and get some sleep'. She ignored this advice and followed her gut instinct that his problems were serious and took him to hospital and saved her baby's life.

She followed her gut instinct that her baby's symptoms were serious and this saved her baby's life.

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Age at interview: 3

Sex: Male

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Then when he was 11 days old, I was breast-feeding at the time, and he didn't want to feed at all and when he did try and feed he was gasping for breath. He was quite pallid, grey in colour, had a blue tinge around his mouth and was breathing quite fast. So I took him to the primary care centre which is a sort of out-of-hours doctors at the hospital because our GP doesn't visit. And they said 'oh he's just got a bit of a cold' and you know, that was it really, just give him some Calpol use Carvol on his bed-sheets and that was it. The next morning he still hadn't drunk anything, I was concerned that he may become dehydrated, so I managed to get an emergency appointment at my GP's surgery. I saw the doctor and she felt that he probably just had a cold. And I said 'well aren't you concerned about his colour, appearance and the fact that he was breathing quite fast'. And she said 'well no, he's just, you know, he's got a cold' and then she told me to go home and get some sleep.

So I actually went out with my parents that day for lunch, went back to their house and tried to feed him again and he was still the same. But he was very sort of limp, really, just quite drowsy and when he did cry he sounded like he was in, not in pain but I was concerned that there was something wrong with him because it wasn't just a 'I want a feed' sort of cry. So I actually got him home, I phoned the midwife, although he'd been discharged, and told her about the symptoms. And that I was concerned that he could become dehydrated and I felt that the doctor had not checked him over properly in the fact that she didn't listen to him with a stethoscope or anything like that. So she came round with a colleague, took his pulse, his resps and obviously she could see his chest falling and rising quite quickly and told me to get him to hospital straight away, which I did.

Yes, had I been a first time Mum I would have taken everything the doctor said as gospel. And I probably wouldn't have rung the midwife and if I hadn't have done that I would have put him down in his pram to make tea for the other children and gone back to him, and he wouldn't have been there, he would have been dead. I was told that at the hospital so I sent my midwife a large bunch of flowers and a box of chocolates to thank her.

You had been to the GP first?

I had seen 2 GPs; one at the Primary Care Centre at the hospital and then my GP the next day. I was quite angry with them because I think they thought I was just tired and a bit neurotic but I wasn't. I knew that there was something wrong with him. I've never seen it with any of my other children and it was just my gut instinct; I knew there was something very wrong with him.

One father who visited his GP on many occasions over three months about his son's feeding problems, poor weight gain and persistent cough, was only taken seriously when the cough became so severe that they insisted that the GP check his chest, and his heart murmur was finally discovered.

Describes their baby's symptoms and the missed diagnosis by several health professionals.

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Vikram was born in June, June of 2002. Normal delivery, normal, no problems. That was in June, the last week of June. And around the mid-July, it was when we for the first time we felt that he wasn't feeding very well. Now, when we say he wasn't feeding very well, he used to take an awful long time to drink maybe 30 or 50ml of normal milk, of SMA milk. He was on his mother's milk as well but he wasn't doing very well on his mother's milk either. He was taking a really long while to drink. We mentioned this to the health visitor and she said 'that's okay, that's something, some babies do take long'. We also didn't give it too much attention because [son's name], that's his older brother, he was a fussy eater, he was a fussy drinker and he still is. So we thought, possibly Vikram is also like that.

But eventually it did become a problem in that he didn't get enough milk with that, in that he wasn't taking enough. We went to the GP a few times but nothing really happened. And then we also realised that he was coughing more than normal. And it wasn't a normal cough. So we mentioned this again, again they said it was something common, go away. And one other thing that we noticed at that time was that the back of his head when he was sleeping was getting all wet. Wet with sweat and his pillow was getting all wet, soggy. So we again mentioned this to the GP when we went and he said that was something that would go away. But nothing really happened.

Then on the 23 September, that was the day he was actually diagnosed, and on that day, that morning really we noticed he was coughing very bad. And this cough was much different than the cough that he'd had all along. And it was quite bad and it was not a normal cough, really bad. So we took him to the GP and we said 'please listen to what is, see what his problem is' and then the GP said 'I hear a murmur in his heart, can you go to the hospital?' And they wanted us to go to the hospital. We went there and we were there all day and towards the end of the day they said that they suspected a hole in the heart which is the VSD.

Another mother recalled that that she felt the doctor didn't check her baby properly at the discharge examination. For five months she had difficulty feeding her but each time she expressed her concerns to the health visitor she was told to try another method of feeding. It was only when she was seen by a different GP for a cold that she was told the baby was cyanosed, and she was rushed to hospital and found to be in heart failure.

Her concerns about her baby's symptoms were not taken seriously by the health visitor or her GP...

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Her concerns about her baby's symptoms were not taken seriously by the health visitor or her GP...

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Age at interview: 12

Sex: Female

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And it all came to a head when she was four and a half months, her sister had croup regularly so we were used to croup attacks. If ever you do a website on croup, I can give you masses of information on that. And it was sort of September time and she, my elder girl had this croup attack in the night and the little one, the baby, started with a cold so she was all runny nosed and very snuffly and not right at all. And so my husband was upstairs with the croup (laughs) and I was downstairs with the snuffles. And she was all right if I sat her up and I slept sort of on the sofa, with her upright, she was always comfy in that position, always more comfortable in that position. The next morning you know I thought, 'oh god', you know 'I'll haul her down to the surgery'.

Managed to get an appointment, didn't see our usual GP and saw a female doctor who hadn't, who I had not seen before, said I said, 'You know, here we are with croup and a cold' And she said, 'Well there's nothing we can do with croup'. And I said 'I know that, but can you know, just check her throat because she', anyway that's another story, and she said, 'Well I'll look at the baby first' and she took her and she said 'How long has she been like this?' 'What do you mean, she's got a cold, you know the cold sort of started a couple of days ago but she's getting really snuffly'. 'No, how long has she been cyanosed?' which is blueness and I said, 'Oh she's been like this ever since she was born'. And her feet, you know, the soles of her feet were always bluish, but babies' feet you know, because of the, the thinned skin, that you know, can see veins. I can remember saying, 'Do you think her feet should be this blue, you know?'

And that was the start of it. [Pause] She said, 'Well she's definitely cyanosed' and, and she sounded her chest and I could see the alarms bell ringing for her and she said, 'Oh I think she's got, I think she called it bronchilosis, bronchilosis which is like a bronchitis sort of thing that babies get. And she said, you know, 'I want her to go hospital now'. And so rang my husband and he sort, sort of rolled down because he was sort of thinking it was, like one of my elder daughter's croupy days, nothing too much, nothing too alarming.

And we got to the hospital and I was sort of thinking, 'Well how am I going to manage this and I've got to stop in with the baby then my husband'll have to take time off work' or 'No, I can get my mum down' 'cos my mum's a staunch woman, you know, she'll come. 'And we'll probably going to be in about 48 hours, perhaps if that, you know, probably give her some antibiotics'

She was seen by the first doctor, who sort of listened and listened and listened and started asking questions about her feeding and how she was and things. And none of them said anything to me, 'We think this is or whatever' but you know it was quite, it was obviously not this chest infection, this bronchilosis. And there was the first one and then there was another consultant and then there was finally, this lovely chap, came, much older and very, very patient with [our daughter], who was quite fed up at that time but he was very, he was very gentle with her and he said, he examined her and he said 'Well there's no doubt in my mind that her liver's enlarged'. And in that heartbeat I thought, 'Oh my God' you know. 'Does he think, what have I done wrong? Immediate guilt, that, that I'd done something wrong and then, did they think that I'd hurt her, dropped her or, it was some sort of' It was this awful panic.

And then he said, 'I think, I think that her heart is, she's in heart failure'.

Sometimes congenital heart disease is not discovered until the child is older. One mother explains that her two-year-old daughter was well apart from occasional breathlessness that had got worse while they were on holiday. The GP discovered a heart murmur and she was referred to the specialist hospital where tests found a partial atrio ventricular septal defect.

Describe their daughter's symptoms and diagnosis with a partial ventricular septal defect at the...

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Age at interview: 5

Sex: Male

Age at diagnosis: 2

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Mother' We were on holiday as a family, the four of us, my husband and two children and when we were on holiday my youngest daughter, we noticed that she was quite breathless. It was quite a, a hilly resort we were at and obviously got a lot of climbing of steps and we noticed that she was quite breathless. So we're coming back from holiday which was in October we returned back and I took my daughter to the, to the doctor's, to my local GP.

When I turned up there she checked her over and she, she gave her some antibiotics for her chest infection and she asked me she didn't alarm me at all but she asked me to come back the following week. Just to double check that it had cleared up. This is really a, you know, [my daughter] had had chest infections already.

So we returned the following week and when I returned the doctor mentioned that she could hear a heart murmur and she said, 'Don't be alarmed' you know 'it's found in many children. Don't worry about it but just to, you know, to have it double-checked she needs to be referred to the hospital.

And I really I was quite calm about it, I wasn't worried about it and we just sort of sat and waited for a hospital appointment to come.

So we went in, and went to the hospital with her first of all she, they did an ECG. The doctor sounded her and he said yes that there was definitely a murmur there and he asked us to go over to the main hospital and she was given an ultrasound over there. Then I think my heart rate started increasing then and I thought 'Yeah, there's something wrong'. And we went over and we were taken into this room and my husband and older daughter was there as well and we went in and they took the ultrasound and the doctor called for somebody else to come and have a look at it and by then I just knew there was something major and the tears started and you just get in such a state.

And by this time I'm getting so upset and that my older daughter's getting upset, you know, but we still really didn't know what's wrong and they said that yeah [our daughter] had a hole in her heart but there was, was slightly more than that and could we go back over and see the consultant over in the children's hospital.

The British Heart Foundation produces a series of booklets called ‘Understanding your child’s heart’ which provide detailed information on different heart conditions. they discuss symptoms and teatments, and where to go for more support, please see their website for more details.

Last reviewed July 2018.

Last updated July 2018.