Feeding problems and congenital heart disease

Babies with a congenital heart defect can be very difficult to feed. Here, parents describe their experiences of feeding their newborn baby, overcoming problems and what feeding was like when their child went on to solids.

Not all parents had problems feeding their baby. Some babies fed well and put on weight, and experienced none of the problems that many cardiac babies have. One mother of a child with SVT recalled how her baby guzzled its milk and feeding had never been a problem.

Explains that her baby who had SVT never had any problems feeding.

Gender Male

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He was a brilliant feeder. To be honest they say that children that have been, well I say they say, this was what the hospital told me that children that are in SVT which is, I don’t know what actually is classed, at what rate the heart goes up to, but all I know is it’s very fast at that, at that point, but that children in SVT are brilliant feeders. So he used to take down about 4 ounces of milk in about 3, 4 minutes. So you’d be like this and the bottled be gone which was amazing;

I did try and breast feed him but he had such a strong suck that it just, I had to put him on the bottle. And I mean he was fed with the tube for the first week they’d put a tube, a tube up his nose and just fed the milk into his stomach through that. But they’d given him a dummy to try and make sure he, he developed his sucking reflex. Which was fine, you know, against all advice they give this little new born a dummy. So I mean he never had a problem feeding. He used to, sometimes he used to get a bit sweaty hed be quite clammy to the touch but, I mean to be honest, you know, he used to fly through the milk. It was never a problem.

And, they said it is really common that they just, it’s almost like they’re guzzling their milk but I think they’re burning it off so quickly that, I mean I can’t talk for other babies but that’s what I’ve been told.

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Other parents described a constant battle to get their baby to take its milk, only taking a few ounces at a time, slow feeding, not gaining weight. Some mothers put supplements in their baby’s bottle to increase their weight.

She overcame her baby’s feeding problems by using a combination of breast-feeding, expressed milk…

Age at interview 3

Gender Male

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But in the early days as well, when he was diagnosed and hed had his first lot of surgery the other huge concern is that in general babies with cardiac problems are slow to gain weight, they don’t feed well and Felix was fed with a naso-gastric tube as they all tend to be when they’re first born. He was very reluctant to take a bottle and he was slow to gain weight and when we came home initially he still had a naso-gastric tube and we were trying him – weren’t we? – with a bottle as well. And I attempted to breast feed him. And initially we were just switching from one to the other and didn’t seem to be getting anywhere. And eventually he did take to breast feeding and, and we ironed out his sort of feeding problems but it did take a long time and it took, and it took a lot of time as well because hed only have very small amounts. You know, little and often and he was regularly sick. And you’d find that you’d no sooner finish one feed and wind him and you’d be ready to start the next one.

And we had extra calories – didn’t we? – to add into, we were giving him a bottle, to add into the bottle or if you were feeding him with a tube to put into the tube. But you used to find that he wasn’t able to digest it very well and hed, hed sort of bring that up. And I think you find that most parents say the same thing, that theres that constant pressure all the time to get food down them so that they gain weight and it is a very slow process.

How did you overcome that?

Just persevering really but it was very, very time consuming and, I mean I did breast feed successfully but I felt that the support that you got with regard to feeding was actually very, very poor and the, I think it’s the, I think it’s the British Heart Foundation that are actually rewriting the feeding leaflet at the moment and they’ve consulted our local hospital about it and I have had some input into that. But at no time did anybody ever say that it was really even possible to breast feed a cardiac baby. Any literature that you were given was quite negative.

But anyway when I came home I took the tube out and I actually fed him with an oral syringe. That was what we did at home. Through, through his mouth but, but in a controlled way and that isn’t suitable for all children because sometimes they have reflux problems as well. I know that but that was what we did. And then when he went into hospital for subsequent surgery he did have the naso-gastric tube down immediately after surgery. But once he came off the ventilator I then insisted that he was then fed by an oral syringe. I expressed milk and then used my milk because it was easier for him to digest. And, and that was how he was fed. So I’d breast feed him when he had the energy and when he didn’t I’d supplement it with the oral syringe. And that worked for us.

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Describes the battle she had feeding her newborn baby but said it got better when he went on to…

Age at interview 3

Gender Male

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So it was this battle; do you think hell have little bit more, let’s try him again. And he might have, you know, a couple of ml and you’d write that down and you’re sort of adding it up, and were nearly there, were nearly there, you know. Try him a little, little bit more, see if hell have a little bit more. And you would just sort of, willing him that please just have a little bit more, a little bit more, and it was just sort of a 24 hour thing all the time on your mind. Can I get another ml of milk down, will he take an, and then off course hed be sick. And he did tend to, to vomit quite a lot because I think, you know, again hed had this operation for the malrotation of the gut so his tummy had been played about with so he was a bit delicate. He was also on a lot of medicine. He was on diuretics, which do tend to upset the tummy anyway. So you know it was just this constant, constant battle of always on your mind of feed, feed, feed, feed, feed, you know and I mean it’s like that when you’ve got a baby anyway, you know, feeds every 3 hours, or whatever. But it was just so important for Sam, so important that he had this milk and just so difficult to get it, him to take it. And as I say, you just, sort of live your life, just thinking you know, that’s it, this is my life; my one aim in life to get so many millilitres of milk, you know into Sam and you do start to think, ‘You know is this it? Is this what’s going to be like, forever?’ But it’s not, you know, it does end and it does get better.

And it certainly did improved once he started to go onto solids. He could cope with that so much better. Purely, I think, because it’s not this constant sucking, you know, he could have mouthful of food and have a break and breathe. And then have another mouthful of food, you know, and he certainly coped with that a lot better than the milk.

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Describes the problems she had with feeding her baby and recalls that the health visitors didn’t…

Age at interview 12

Gender Male

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And I spent a small fortune on different sorts of teats and sterilising needles and making holes bigger and doing different systems and I’m sure that the chemist thought I was barking. And I think by this time I probably was a bit post-natal, absolutely obsessed with her gaining weight and her feeding and what was happening. And finally the Health Visitor said ‘put her on a bottle, this is just you’, and I felt such a failure, I felt such a failure.

So we did. We got formula milk and we started giving her bottles. Which was a nightmare because she wasn’t really interested. And feeds would take, feeds with a bottle would take sort of 3/4 of an hour or an hour, an hour and but she did seem to thrive a little bit more because at this time she was practically off the percentile chart. She wasn’t quite off it but she was. And various Health Visitors would, they would weigh her and they’d measure her head and because there was some growth then that was OK. And, this is with hindsight, everybody looked at their little part of what they should be doing and if there was a tick, if they’d checked it and it was OK, nothing wrong there, then that was it. Nobody ever sort of referred on. And also everybody looked at me, they didn’t actually look at my baby. They didn’t really consider her. And they didn’t refer on because they looked at her and yes there was some increase in weight, yes there was some, you know her head, head was obviously growing so therefore she was growing a little bit and because she wasn’t off the percentile, because she was just staggering along it, then I would get sort of repeated stories of ‘Oh babies that they knew that all of a sudden just raced away. You think ‘I don’t want to know that. This is me.

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Babies with a heart condition who are already breathless seem to find it difficult to control breathing and sucking at the same time. Several mothers explained that often their baby would be sick after feeding and then they did not know whether to try again. Exhaustion from frequent and stressful feeds was a serious problem for many mothers during their baby’s early months.

Many described feeling frustrated, worried, and overwhelmed by the need to get their baby to take its milk (see Interview 14). These feelings had, in some cases, been exacerbated by visits from the health visitor, who may not have had to deal with CHD babies and so had not appreciated the nature of the problem (see Interview 21).

In some cases, children with congenital heart disease also have other conditions which cause their problems with feeding, for example, mouth deformities (Down’s Syndrome, VCFS) or reflux and gut problems (Di George Syndrome, atrial isomerism). One mother whose son had surgery for his malrotation of the gut, said he used to vomit frequently which contributed to his difficulty feeding (see Interview 14).

Several mothers emphasised how important it was to realise that they weren’t the only one with a problem feeding their baby. Advice on feeding for children with heart problems is available on the Children’s Heart Federation website.

Many mothers of babies with a heart condition find it difficult to breastfeed. One mother we interviewed who had successfully managed to breastfeed said it had taken perseverance but that it seemed particularly important as being the one real contribution she could make at that time to caring for her baby (see ‘Messages to other parents’ and Interview 05). A few mothers felt that the written information on breastfeeding didn’t encourage mothers to persevere.

She expressed milk when her baby was in hospital, and successfully breast-fed and explains the…

Age at interview 7

Gender Male

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Again that’s another aspect of early surgery, if you’re feeding what, what you do while, while the surgery takes place and the recovery takes place while they’re full of tubes. And I had never met a pumping machine before and luckily there was another mother there who introduced me to my appointment. Every four hours I’d go in and pump and it became the sort of lifeline, you know, it became the one thing I could do for him was to be, be doing it so that they could feed it to him but also be doing it so that when he was weller, or better sorry, I could go back to feeding again. Other than that your child is out of your hands, theres nothing you can do to help and you feel so completely helpless. The nursing staff are managing him in every way. Hes got tubes everywhere so just, even changing the nappy is hard for a mother to do because one isn’t that experienced at 7 weeks.

I have mentioned that I was breast feeding and that I pumped and when you pump a pump is far more powerful than your baby, particularly post-op, the baby’s suckling ability is very weak so I was having tremendous problems with just over milk production and I had to spend an hour in the bath just trying to ease my breasts down and it took a good three or four days for them to stop producing too much milk for him and that he couldn’t even cope with the volume that was coming out. Which was an interesting aspect which certainly none of the breast feeding counsellors had, had mentioned and when I rang up in intense pain from hospital they, they weren’t able to suggest anything to help me on that one.

Where did you get the advice from to do that?

From the National Childbirth Trust breast counselling service. Which is available to anybody who rings their help line.

And was he able to feed OK?

Yes, yes. And it’s, that’s I think I felt that it was the thing that I could do for him. It was, I could give him the antibodies that come though the mother’s milk and it was the most I could do for him. It was also the least I could do for him and so all the other aspects of problems with breast-feeding just paled into insignificance, as it was something that I really wanted to do. So I fought through that and I continued feeding for quite a long time.

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Some mothers expressed milk and bottle fed their babies or used formula milk. Sometimes babies were very sick on some types of formula milk. One mother contacted CLAPA, the Cleft Lip and Palate Association which supplied her with different teats and bottles that she could use to feed her baby but found that using a syringe worked best. Another couple had given frequent feeds from smaller feeding bottles.

She tried different bottles and teats which she got from CLAPA, but found that oral syringes…

Age at interview 3

Gender Male

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But I also got in touch with a charity called CLAPA, the Cleft Lip and Pallet Association because I’d seen somebody at our local hospital with a different type of bottle that was flexible and you could actually squeeze it. And the milk would go into the baby’s mouth without it actually sucking. And I asked about it and was told that I couldn’t have one unless I’ had a referral to the speech therapist but at that time, in 1999, it, it took a long time for you to get a referral and by that time it would have been too late. So I rang up the manufacturer of the bottle because the brand, the name of the manufacturer was on the bottle. They gave me the details of CLAPA and CLAPA actually sent me all sorts of bottles and teats to try. And we used, we used the soft one – didn’t we? – a few times. And then theres another one with a like a scoop and the milk goes down the scoop into the baby’s mouth and, but as I say, ultimately I went back to the syringe but I did pass on the information to the local hospital and in the feeding leaflet that they’re doing at the moment with the British Heart Federation that CLAPA’s actually mentioned and when I phoned them they said that they do actually help families with children with feeding problems other than Cleft Lip and Pallet problems and I, I just wish that when I asked at the hospital that they’d have given that information more freely because for another parent that bottle could have been the difference between the baby feeding successfully with a bottle or ending up needing a gastrostopy which, I mean a lot of them do.

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One mother explains that after getting very upset and depressed about her baby’s feeding, she and her husband started monitoring her feeds on a 24 hour chart, which had helped them to feel that they were making some progress. Another mother said that sometimes getting friends or family to bottle feed her baby had been successful. One mother had fed her baby in a car seat, which had worked.

They monitored their baby’s feeds on a 24 hour chart, which had helped them to feel that they…

Age at interview 3

Gender Male

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No she never had a drip, she was always on the bottle. Which was a very good thing, we were very happy about that. She, she took a bottle almost immediately although it was a very difficult time because we were told to be careful of her feeding. If she wasn’t feeding, putting on weight she would have to go back to the hospital. So it was a permanent worry and she was very fretful the first few weeks. Shed have a few good days and a few very fretful days. So I would think she was getting better and then she wouldn’t feed very well and in the end I was very, getting very upset and very depressed about her feeding. She would scream through a lot of feeds and so my husband made a chart on the computer and, and it was a 24 hours chart and wed have to write down how many ounces shed, how she took it and when she had it. And we used to do this and add it up and see how many ounces shed had. And actually when we did that we found that through the 24 hours she was expected to take oh, 24 ounces and although she had a few very bad feeds she would make up for it in another part of the day. So it helped me, you see my husbands very logical you see and when he was at work he would just say, ‘Just write down how much shes had and it was a really good thing. And I kept it going for some weeks and I wrote down exactly what shed had. An if she had an ounce and I was very worried because she was screaming through it I wouldn’t worry so much because I’d look back and think what she had before. So that was a great help really.

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Babies who had surgery were generally fed by naso-gastric (NG) tube during recovery in intensive care. Some mothers had managed to express their milk while their baby was in hospital so that they could continue with their pattern of feeding (see Interview 24). A few babies came home with their NG tube. Mothers said that feeding by NG tube had been time consuming and tiring.

Explains that feeding by NG tube was a tiring and time consuming process.

Gender Male

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Well no, I mean that’s been very hard because sometimes the feeds would take over an hour to go down his tube. So you’d be standing with your arm up for an hour or so feeding him because obviously it’s all gravity fed so the higher you hold the tube up the better. That was very time consuming.

So does it, does it have a stand?

No. We just used to have to hold it yourself, yeah.

So you really are restricted in what else you can do?

Yes, yeah, when you’re feeding him, that’s it. You know, yeah.

And how often was he getting fed?

Every three hours.

And it was taking an hour at a time? And you had the other twin as well. You must have spent most of your days just feeding?

Yeah, yeah.

Yes, the hospital were very good, yes. And before you give him a feed you have to check the stomach contents. You have to draw out with a syringe and test it on litmus paper to make sure that his tube is still in his stomach because if he moves around it could go higher up or lower down. And a couple of times we weren’t getting anything. The paper wasn’t going pink, it was supposed to turn pink. And it wasn’t going pink so wed have to take him up to the hospital and they would just move the tube around a bit until they got it pink. Every time it was learning, yes. And sometimes he would pull the tube out himself, so wed have to go up again and they’d put the tube in for us.
To the local hospital?
Yes, yes.

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One new mum said because their baby had an NG tube they could not leave their baby with others to look after, but also because they hadn’t expected their baby to come home with an NG tube, it was a reminder that they still had a long way to go. A couple of new mums commented that strangers made comments about their baby’s feeding tube when they were out, which sometimes upset them.

Explains that strangers made comments about her baby’s NG tube which she sometimes found upsetting.

Gender Male

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So that is quite difficult and it’s one of the more obvious external things. So when were out and about shopping and things people quite often will remark on, on the fact that hes got a tube. I mean people sometimes say the, the worst things you know, ‘What happened to him then?’ I say well ‘He had a fight with a cardiac surgeon?’ You know, or things like, ‘So what’s wrong with him?’ And it’s just like, it’s because of that external sign that’s the thing that people notice.

How do you feel when that happens?

It depends on kind of the mood I’m in at the time. If I’m a bit down then it, it’s quite upsetting. Otherwise I just sort of, you know, sometimes I tell them, sometimes I don’t. Sometimes just sort of, you know, say ‘Oh it’s just for feeding and don’t’ tell them any more than that. Sometimes I’ll just say hes got problems with his heart or something. And it just depends on what mood I’m in or you know what people, what, what sort of impression people give me as well. ‘Because sometimes I just think it’s people being nosey whereas if it’s people that do seem like they actually, you know, they actually care then, yeah, you might tell them a bit more.

But I do think it’s strange that people will ask because it’s sort of like ‘Well, you know, if I tell you this information, what are you going to do with that piece of information? What, what are you going to say to me?’ You can’t say ‘Oh well I’m sorry’ because you don’t even know me, you’re just somebody on the street.

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Most found that their baby’s feeding started to pick up when they stopped using the NG tube.

Some parents said when their babies went on to solids, feeding had become a lot easier (see Interview 14), or they had developed a good appetite. One little girl had been fed by NG tube for a long time and couldn’t chew easily. One mother described feeding her son mushy food until he was aged 2 or 3 because he had difficulty with chewing.

It was difficult weaning her baby on to solids because she had difficulty chewing which she…

Age at interview 3

Gender Male

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Mother;And then she sort of come off there and I could, I could wean her onto sort of solid food; I think she started solids when she was about, I don’t know, 10 months, 11 months, something like that. Which was a battle, that was. But ..

How was it a battle?

Mother;She, she couldn’t chew at all, you know. She, because she was so used to having the tube, you know, and everything sort of went straight down but when it actually come to, to try and chew she, she couldn’t do it. Saying that even now, I mean, shes, shes 3 now, shes a lot better, theres still some things that she can’t eat. She just don’t chew properly. Or shell chew for a little bit and then shell spit it out, she just gets fed up for chewing, you know, but most of the stuff she can sort of eat now.

Has anyone said why that might be?

Mother;No. Well my Health Visitor, said maybe, said it may be due to the tube because she was tube fed for a while. You sort of persevere really, keep trying different things but I mean she is a lot better but some sort of meat and that she can’t sort of chew properly. Shell try but that’s it.

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Medication for congenital heart disease

Some children needed no medication or only took medicines for a short time after an operation. Others were taking medicines for several months or years....