Nutrition, malnutrition and feeding problems

Mother feeding her child

Almost every expectant parent has an idyllic picture in their mind, when the newborn child grows and happily babbles after being fed. But what about when the reality proves to be the opposite: the child can’t feed? They refuse to eat, won’t swallow or can’t swallow?

Feeding provides nutrition for the child, which is essential for their mental and physical growth. It is also a way to be close to the child and to feel satisfied with being a parent. If a parent fails with this task, they might feel guilt and worry for the child’s wellbeing, which can be very stressful.

Feeding a newborn baby is supposed to be a moment of harmony and happiness. However, if the child is born with a congenital heart disease, feeding can be a trying and difficult event. Several studies have shown that malnutrition and failure to thrive are common with children with congenital heart disease. As many as 40–60% of children with this disorder are undernourished. A healthy baby doubles their weight in 6 months; however, a child with congenital heart disease put on weight more slowly. Their growth is also affected by the heart defect.

Why do children with congenital heart disease not grow as other children do? The answer is because the heart defect makes them need more energy. Their diagnosis might also complicate feeding for several different reasons. The heart failure makes them too tired to feed. Some of them might vomit. Others seem to have difficulty in coordinating breathing and nursing. In older children, past experiences with the feeding tube could be a factor. And malnourished children do not feel hunger.

If surgery has to be done right after the child is born, then nursing never really gets started, which is a great disadvantage for many children with congenital heart disease. Their oral reflex does not get stimulated.

Babies gain and lose weight every day. Since weighing the baby at home can be difficult, the baby’s paediatrician, cardiologist or a nurse is the best person to record the weight. This measurement provides an indication of how the baby is growing.


If the feeding problem is easing, the long-term effect on the child will probably be small; however, if the difficulties continue for a long time, the child is at risk of malnutrition. Malnutrition and growth obstruction are common for children with congenital heart disease.

The gastrointesitnal maturity and function of some children with congenital heart disease could be delayed. Many children with this disease also have a delayed gastric emptying. Heart failure can also lead to oedema in the intestines. Furthermore, children with congenital heart disease have problems coordinating their breathing and swallowing. Some also have a swallowing dysfunction.

The best option for a child with this disorder is a complete surgical correction, after which the child gains weight and height. However, some of the more complicated heart failures need more than one surgical procedure, meaning that the child has to live with the feeding problems related to this disorder for possibly several years.

There also are complications after surgery—for example, hypermetabolism.

Feeding babies

A baby can either be bottle fed or breastfed. Flexibility is important; a breastfed baby may need nutritional supplements. Some babies also need to be fed through a feeding tube.

If the child is taken to surgery immediately after birth, then breastfeeding cannot be started. Instead the mother has to start pumping milk from her breast the first 12–24 hours to be sure to maintain the milk supply.

For the baby, breastfeeding is less of a strain than bottle-feeding is, since it is easier for the baby to coordinate breathing, sucking and swallowing while breastfeeding.

Many parents worry whether their baby is receiving enough milk when being breastfed. As a guide, if the baby is breastfed 8–12 times a day and if their wet diaper is changed 6–8 times a day, then the child is probably receiving enough milk. One can also listen to the baby’s gulping to know whether he or she is latching well.

Any questions about nursing should be directed to a lactation consultant or midwife.

If the child is bottle fed, the parent should discuss which formula is best for the baby with the paediatric dietician or health-care provider. Some babies with congenital heart disease have difficulties feeding from a regular teat, so the parent should try several bottles before settling on the best one. Another option is to make a larger hole in the teat.

Solid food is added when the child is around 6 months old. The texture of the food is gradually increased from pure to lumpy. Parents should vary the food, the volume, the consistency and the way in which it is given. Preferably provide small portions and serve food often.

Tube feeding

Some babies with congenital heart disease need additional feeding with a nastrogastric (NG) tube. The tube is placed in the nose and passes through the stomach. Alternatively, a gastrostomy tube (GT) or jejeunostomy tube (JT) can be used if the child needs additional feeding for a long time. The GT is surgically placed into the stomach whereas the JT is surgically placed into the intestine.

While the baby is tube feeding, it is important to continue to feed the baby orally. The taste experience is essential and the training in oral motor function is important.

Heart medicine

To control heart failure, many children are given drugs such as digoxin (Lanoxin) or furosemide (Lasix). Give the baby the medicine by dripping it into their mouth with a dropper. Never mix the drug with the formula if the baby is fed by bottle.

If the baby vomits, do not try to give the medication again, wait until the next scheduled time. Contact the cardiologist if the baby vomits several times in the day, since the medication might have to be adjusted.

Any undesirable side-effects from treatment should be recorded.

Reluctant to eat

After surgical correction, some children remain reluctant to eat, and they continue to be fed by the feeding tube. The lack of oral motor training probably makes the child uninterested in eating.

Children who do not eat, need to practise eating and stimulating the mouth. A speech therapist can assist the child.

To help appetite

When children have been tube fed for a long period, they can sometimes have difficulties starting to eat and using their mouth. This is caused by the lack of oral training and the little experience that they have in using their mouth for eating.

Newborn babies have a great ability to use their senses: they use smell, feeling, and taste to find food to survive. Their reflexes also help them. But what happens when one of these senses does not get used because the child is too weak? Alternatively, there could be an incident that manifests itself later on in reluctance to food. The child refuses to eat. Or sometimes, the child eats, but just a few bites. And then maybe spits it all out.

If the child has a sensory dislike to a specific food, it could make him or her feel nauseous and even vomit, meaning that the child refuses to eat. Sometimes it can be easier for the child if food is served unmixed.

The most important thing is for the child to find their appetite for food. There are several ways that could help.

  • Talk to the child. For an adult, constant talking about the served food can seem like nagging. But for the child, the worlds are an important guidance. Talk about what is happening, “Now I’ll put some food on your plate”, “I’ll taste some of it” etc. It is important to comment on the food, not to ask questions, because if the parent asks a question such as “Shall we eat?” and the child replies “No”, then what happens next? It is better to simply say “Let’s eat”.
  • Focus on the food. If the child is unable to concentrate on the food, show that a meal is about enjoying food and eating together. Avoid any persuasion or requests from the child. Simply investigate the food together: smell it and feel it.
  • Do a survey of the child’s preferences. Parents know what their child likes and dislikes, but you might notice patterns if you keep a record. Some children get stuck with specific food without daring to try new tastes and consistencies. If the child refuses to eat a certain food, never force him or her to eat it. Instead, try to find a new food that the child might enjoy. One has to do this work slowly, step by step.

Finding peace while eating

If the child associates eating with anxiety, try to change the setting for the meal. The meal should be harmonic and peaceful, without people moving around; try to have everything you need at the table so that you don’t need to fetch things during the meal.

Just serve a small portion, and then the child will see that portion diminish.

If a feeding tube is used, ensure that it does not hurt or scrape the child.

Seek help from the dietician

Do not hesitate to get help from a dietician or a specially trained nurse. They know the best type of nourishment to use to enrich the food. A child with congenital heart disease needs many more calories per day than other children do. The way the food is served is also important, as is the consistency of the food. Be sure not to serve too big portions; small ones will make the child feel more confident.

The dietician also helps to add nourishment to the diet of a newborn child. It is a comfort for new parents to have a dietician to discuss these matters with.

Psychological aspects

There is a lot of symbolism in eating; it is not just a necessity. We also eat when we celebrate something or when we meet our friends. Eating together is a way of feeling affinity. When the mother nurses her newborn baby, it is also about being close to another human being and forming a bond. Food and eating often symbolise the good things in life.

Eating is connected with our feelings; if we are overwhelmed with feelings we are unable to eat. Conversely, sometimes people eat to get rid of anxiety and mental pain.

When the child refuses to eat, the parent can feel insufficient. If the child is unable to eat and is very sick, one will be very anxious and worry that the child won’t survive. Parents might think that their child doesn’t like them or their food, making them feel ashamed, guilty and like a bad parent. Eventually, these feelings might result in frustration; one feels that the child is a bad child for refusing to eat, and the parent might feel repulsion or even contempt.

This downward spiral is maintained by tiredness and stress, insecurity in the role as a parent, lack of emotional support, differing advice and a moralistic attitude from others.

To avoid this kind of escalation, parents should observe and analyse the food situation from all the aspects: medicinal, speech therapist, nutritional and psychological, as well as the family perspective, since the feeding situation can affect the entire family. The professionals who meet the family have to support the parents and provide coherent advice.

Taking care of the teeth

The teeth of many children with congenital heart disease are in a poorer condition than are those of other children for several reasons: many children with this disease eat more often, and sometimes during the night; they vomit more frequently; the sucrose in their prescribed drugs attacks their teeth; and the diuretic drugs affect the flow of the saliva. Thus good care of their teeth is crucial.

Older children with congenital heart disease with a high energy expenditure also need to eat more often; therefore it is vital that they continue to take proper care of their teeth.


Ek, Ingalill and Uhlén- Nordin. Varsågod – Handbok för föräldrar till barn med ätproblem. Västerås, 2007. 

Hopkins, David. The Cardiothoracic System (Chapter 13). In: Clinical Paediatric dietetics. Blackwell Publishing, 2007. 

Ördén, Heléne. Feeding problems amongst children with congenital heart disease.

American Heart Association, Hjärtebarnsföreningen. Masters thesis, Uppsala university, 20

Author(s): Ulrika Hallin
Reviewed by: Heléne Ördén
Last updated: 2008-09-22

Do you want to tell us about your experiences? Leave a comment on this article.

Comments on this article

21.01.2009 | Denise Alexander, United Kingdom
Thank you for raising this issue. My daughter was born with a congenital heart condition (ALCAPA) and was tube fed for the first three years of her life. Your article was very interesting.
However, one point that I feel could be stronger is the terrible guilt and sadness I felt - and I know others feel - when your child won't eat. I used to lay awake at night worrying or wondering what I had done wrong when she would only eat one crisp or tiny nibble of toast. Very closely related to this is the fact that she put on very little weight, even with tube feeding of high calorie formula (Fortini) and my best efforts at encouraging oral feeding.
This guilt and pressure was on many occasions unwittingly reinforced by 'helpful' health visitors, GPs and even hospital dieticians who told me to try 'making mealtimes more fun' etc etc, as if I hadn't thought of it, and thought of nothing else most of the time. They used to look at me disapprovingly if she had not put on very much weight, comment on it as if I was to be punished for failing to care for my daughter properly (failure to thrive with special emphasis on the 'failure' part was how I thought of it) or the lack of weight gain was a result of me being a 'bad pupil'. I'm sure many a time this was unintentional but it was still very upsetting - especially when you are living in a stressful situation anyway.
It was only when I had a second daughter (healthy heart) who ate normally and put weight on without me sweating and worrying over every single gram that I realised that much of this eating/weight difficulty was as much the cardiologists' problem as it was mine. I think if this had been stressed more to me throughout my tube feeding experience, that it was a team effort between me and medics and really not my fault if she didn't put loads of weight on but there were other things that were factors - such as heart failure etc, things would have been a lot easier for me and my family, including my daughter, to cope with tube feeding.
She has an artificial mitral valve now, is much better and eating normally (age five) so we have emerged from the difficulties of tube feeding at last!
Best wishes - I think the site looks fantastic
22.01.2009 | Helen Woods, England
My younger son was born with chd and diagnosed with chronic gastric reflux and failure to thrive. He was fed via an ng tube for some 18 months. Despite several episodes of surgery, including open heart surgery at 11 months of age, which were obviously stressfull, I can honestly say that feeding was by far the most traumatic aspect of his overall condition for both him, me and the rest of the family.
There is too little definitive information on feeding available to parents about nutrition and the impact on growth, ultimate height, longer term feeding etc. We received good medical support, and saw a range of competent, caring professionals. But advice on feeding was often contradictory, and seldom definitive or prescriptive enough to alleviate doubt. For example, we were never specifically told that we should continue to feed our child orally during the 18 months for which he was fed by ng tube. Fortunately we did so, by instinct or more honestly because of our dislike of the tube and desperation to be rid of it, and now understand that this was a vital factor in him ultimately feeding sucessfully without the tube. But no parent should be sent home with a tube fed baby without thorough, prescriptive advice on the longer term feeding implications, even when the tube is expected to be temporary, as this in fact often turns out not to be the case.
04.02.2009 | Juliana Dryden, United Kingdom (Sunderland)
Joshua is 3 years old and his born with chromosome22q11.2 deletion (TOF, immunodefiency, hypothryroidism, hypocalceamia, submocous cleft palate, delayed feeding, vomiting - especially at nights mostly, developmental delayed, speech and language delayed, bloated stomach, socially inapropiate and has shown some autistic-like behaviour)
He was born at 33 weeks, weighed in at 2295 gram, but lost most of his weight because he struugled to feed. Even with tube feeding he vomited for almost two weeks. After he tolerated tube feed he was switch to breastfeeding. by the time Joshua was 4 weeks old he still has not regained the weight he lost. He was put on SMA high energy feeds and breasfeeding. Still Joshua would only pick up 20 grams in two weeks. At 9 months old he only weighed 5kg (with hard work and feeding 24/7) He was eventually ready for his surgery. After his surgery he picked up weight better and at 20 months he reached 50th percentile. The only problem with Joshua he will vomit without any reason. He had a barium meal about two months ago which was normal. They put him on domperidome 3mls 15 minutes befoe a meal/ 4times a day. sometimes it seems to help other times not. Sometime he will still retch but nothing will come up. Joshua still feeds throughout the night. I once tried for 8 nights in a row to get him to go without bottle, but he will vry himself to sleep and awake and end up sitting on the floor for the rest of the night. The whole household will be awake. When he is poorly and not feeding his stomach will be normal size but as soon as he feds his stomch will blow up, this is very uncomfortable for him especially when he has chest infections. Oh when he was below 6 months old milk would just run out of his mouth and nose, and he could only fed 20mls at a time. Even now with vomiting it will come out of his nose and mouth. He is being seen at a feeding clinic but they seems to think everything is okay. I end up washing linen every very day. This has interfere with his development because Joshua is not allow to cry for fear of vomiting. It upsets him so much nowadays that after vomting he refeuse to eat. any ideas or helf will be greatly appreciated.
06.04.2009 | Elizabeth Joy Tuffen, England
My son was born with complex transposition 26 years ago and has always had feeding problems - He has had two open heart ops, two closed heart, one percutaneous valve replacement, a pacemaker and numerous cardiac catheters and invasive proedures.
He eats the same things now at 26 years old as he did when he was 2 yrs old - mainly fish fingers, chips and crisps. He saw dieticians and worked with a psychologist for some years.
There are many theories - one about association of food with vomiting (digoxin for first 3 yrs of life), one about developmental delay in feeding processes and more recently a theory about tiny lesions in the brain caused during surgery, which means that he can learn a rule but not generalise it eg he likes fish fingers but could not accept that a piece of fish in batter might taste the same....
The sad part is that he does not enjoy the social part of 'eating together' when we might go out to celebrate a special event.
He is food phobic and also has other phobias around needles, telephones and certain social events.
HOWEVER he is happily married now, living independently, works part time and enjoys life in the way that he can despite some limitations. SO DO NOT DESPAIR AS A PARENT. Life is for living and that's just what he does!
16.01.2010 | Jessenia Rojas, Ecuador
hola es muy bueno este tema, sabes algunas madres nos toca muy en la alimentación de un hijo con estas caracteristicas . Quisiera una ayuda para solucionar estos problemas con mi hijo. Mi niño ya tiene 4 años pero sigo con problemas de alimentación, incluso ya tengo problemas de aprendizaje en el prekinder. No se que hacer... Ayudenme....
14.08.2010 | Eugenia Miranda, El Salvador
mi hijo nacio con problema congenito en la aorta, fue duro para mi ver a mi hijo aun mes exacto de nacido, su crecimiento fue lento, y sus defensas bajas, propenso a cualquier virus... las vacunas eran como un veneno opte x una alimentacion a base de vagetales, y cocina con alimentos blandos, perdio su voz ahora en dia tiene seis anos, es una voz suave y diferente con su parte toraxica mas baja de lo normal, su desarrollo psicologico y motricidad fina y gruesa. es maravilloso y exelente en cuanto ejercicios fisicos es el primero. esto me llena de agonia, sabiendo que esta limitado a ejercicios competitivos... opto por hacer yoga, natacion y artes, su nutricion es buena aunque sigue alimentandose en bajas raciones... pesa 41 lbras( tiene 6 anos) su masa coorporal es baja... ahora no se emferma mucho a nose de gripes, aprendi ha ser extremadamente limpia en casa, mantenemos limpio sus areas de juegos, el polvo es lo peor ya que si se le complicara casi pierde la respiracion. aconsejo a todos los padres que ellos necesitan apoyo y explicarles que podria verse diferente fisicamente pero siempre darles seguridad y expresarse de una forma racional con otros... especial si son ninos, tambien buscar alternativas de la reflexologia lo hice. por el. tambien practica yoga. excelente para la respiracion, los alimentos balanciados, y con pasiencia. hasta de por vida. son ninos activos fisicamente, se ha comprovado que tienden a tener problemas en la escuela por su actividad, sudan rapidamente... necesario siempre llevar liquidos, tienen mal aliento por sus problemas gastrointestinales, la comida grasosa no es el mejor aliado. suerte con estos angelitos mucho,mucho amor...
24.08.2011 | luis andres guzman, venezuela estado anzoategui
tengo un niño de cardiopatia congenita y cada dia vivo preocupada por su alimentacion va a cumplir dos anos y me pesa diez kilo que debo hacerlui
06.06.2012 | hilda pilar chavez diaz, argentina
mi hijo emfermo gravemente de neumonia y termino con una traqueostomia y no comio durante 18 meses x que se aspiraba. y se alimenta x sonda nasogastrica todo este tiempo ,actualmente ya no tiene traqueostomia y todos los estudios de deglucion le sale negativo pero el tema es que no puede comer aun.cada vez qe come se termina llenando de secreciones y le tengo qe suspender la canse de ir al medico x que nadie sabe decirme algo mas especifico y no se como ayudar a mi niño qe cumplira 14 años este mes y tiene el sindrome de down. antes nunca se habia emfermado era muy fuerte que puedo hacer?