Parents of children with congenital heart disease

Feeding

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.

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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.

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.

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.

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.

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.

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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.

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.

Last reviewed December 2014.

Last updated April 2010.

 

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