Tube feeding children with heart conditions

Why are children fed by tube?

Some babies and children with heart conditions may need to be fed through a tube because they are not able to get enough calories by eating normally. There are a number of reasons why your child may not be getting enough calories by eating normally. Make sure you fully understand why medical staff think your child needs to be fed by tube.

Types of tube

There are two types of tube. Ask the doctor or nurse what sort of tube is being used and why.

Nasogastric tubes

Nasogastric tubes (NGTs) are placed in your child’s nose and go down to their stomach.

snack. If it is not possible for them to sit with you, then make sure that you all spend time together doing other things, for example, playing games or doing jigsaws.

Children who are fed through a tube for a long time may stop associating the process of eating with satisfying their hunger. Letting your child have something in their mouth to taste while being fed through a tube will make sure they continue to associate the taste and presence of food in their mouths with the feeling of their hunger being satisfied.

You can help prepare young children and babies for a return to normal feeding by getting them to use their mouths lots. You can give young children things to suck or chew on and you can play games which involve your child blowing bubbles, making shapes with their mouths and so on.

Gastronomy tubes

Gastronomy tubes are inserted through the skin directly into the stomach. This is done under a general anaesthetic.

Children with gastronomy tubes can eat normally as well as receiving food through their tube. The food that is put through the tube is a special formulation which your child’s dietician will prescribe.

Benefits of tube feeding

�� Giving children medicine through a tube is often easier especially as they will not taste it. �� You will know exactly how much food your child has taken in. �� Children fed with a tube will usually be able to take far more food. �� You can feed children continuously even if they are asleep.

Overcoming problems with tube-feeding

Finding out more

A dietician or nurse will show you how to feed your child through the tube. Make sure that you are confident about doing this before you do it on your own.

The nursing staff will also explain how to care for your child while they are being fed by tube. Feel free to ask the doctors, dietician or nursing staff any questions you might have and let them know if you have any concerns or problems.

With thanks to the Children’s Heart Federation.

Children who are being fed through a tube may feel left out at family mealtimes. Even if your child is not able to eat the same food as you, they are with the rest of the family at mealtimes. Try to give them something to eat at this time even if it is just a light

Parents often find it very difficult to explain heart surgery and the resulting scars to very young children.

The Children’s Heart Federation has come up with the idea of using Molly’s Dollies, a rag doll with surgical scars, to help explain scarring to children with heart conditions. These dolls can be used to gently introduce the idea of operations and scars to your child.

The dolls are available free of charge if the order is endorsed by a healthcare professional, for example your Cardiac Liaison Nurse. They can also be purchase for a suggested donation of £24 (plus £2 postage if outside the UK). Download the application form from the Children’s Heart Federation website (www.chfed. org.uk) - to be completed by a healthcare professional if you’re claiming a free doll.

Or to request an application form through the post call 01376 780 044 or email: info@chfed.org.uk.

Mia, 4, with her Molly Dolly who accompanied her through two of her heart surgeries.

Do you have a child with a heart condition? We can offer you support and a chance to share your fears, concerns and hard won knowledge with other families.

We can provide: - wetsuits, - an activity break for siblings - as well as one for heart children, - discounted holidays on caravan parks, - a free copy of Heart Children book, - discounted MedicAlert bracelets, - children’s colouring books, dental leaflet and much more.

For information about how to join (it’s free) see our website at www.heartline.org.uk and email us at: intouch@heartline.org.uk