Making mealtimes good times

For most of us, food and drink are among life’s great pleasures, not least when you can share meals with family and friends, and most of all when there’s something to celebrate. But among the children Sense supports, difficulties with eating and drinking are very common and mealtimes can be more a source of stress than pleasure. Hilary Todd explores the issues and the support available to help families.

Nine-year-old Adam (pictured left) is enjoying a meal at a local restaurant with his mum, dad, brother and baby sister. He’s eating spaghetti which has been mashed up for him and joining in the family chat. It’s such an ordinary scene that it scarcely seems worth commenting on but as Lydia Howarth, Adam’s Mum, observes: “It’s remarkable that we’ve come this far. I never thought Adam would ever eat.”

Adam was born without a link between his oesophagus and stomach, one of the many difficulties that can occur with CHARGE, a rare syndrome that affects hearing, sight, the digestive and other organs. “Surgeons had to operate to connect his oesophagus to his stomach,” says Lydia “and this pulled his stomach around a lot. As soon as feeding was started he had terrible reflux, so he needed two further operations.

Initially Adam was fed by a nasalgastric tube, he then had a tube in his stomach, and finally his tube was put directly into his gut because he was still bringing food up. Before he was allowed home from hospital, aged six months, I was given resuscitation training because there was such a high risk that he’d either choke or, with a floppy trachea, he’d stop breathing. Luckily I never needed to use that.”

What can go wrong?

Adam is by no means alone in having difficulties with eating and drinking – called dysphagia. Studies indicate that as many as eight out of ten children with CHARGE have eating difficulties, according to Steve Rose, Head of Children’s Specialist Services at Sense 1. “Many children with complex and rare syndromes like CHARGE have problems, as do children with cerebral palsy and learning disabilities. That means that many of the children that Sense supports have some degree of difficulty with eating and drinking, as do many adults.”

Some issues are to do with developmental delay. “Learning to drink and chew is linked with the development of gross motor skills,” says Steve. “Newborn babies instinctively suck/swallow/breathe in that order but by the time they’re sitting up they generally start to munch food and learn to chew/swallow/breathe more flexibly. Until they learn to chew they have to have liquids or puréed food. “Sense staff have met children who are eating puréed foods at all ages. Indeed there are some people with complex difficulties who never learn to chew and whose food has to be mashed up for them so they can swallow it.”

But learning to chew naturally is only part of the story – other physical problems can compound the difficulties. Some children, particularly those with cerebral palsy, have difficulty organising food or liquid in their mouths and problems with sensory awareness, muscle strength and coordination can lead to unsafe swallowing, that is, food going down the ‘wrong way’ and choking them or ending up in the lungs (aspiration) 2. Aspiration is potentially serious because it can lead to pneumonia and other infections. According to Sophie Morsley, a speech and language therapist who runs the Sense Dysphagia Project, aspiration is very common but is often overlooked: “People may always have coughed when eating for instance, but families and staff need to be aware this could be a sign that food is going down the wrong way.”

Reflux, where food is brought up after it’s been eaten, is another common problem but, according to Steve Rose, it is “often overlooked because children can’t tell you about it. Reflux should be suspected if the child vomits, regurgitates, gets hiccups, coughs, cries, appears in pain or discomfort. Some children may even arch their back when eating.” It must be very difficult for children to suffer this discomfort and not be able to communicate their distress, and it may put them off eating because of the sour taste they experience.

Reflux can sometimes be helped by medication, while thickened drinks make it less likely that drinks will come up. There are surgical options too that involve making a ‘knot’ at the stomach opening to stop reflux. This may be done when surgeons operate to insert a peg for tube feeding, although it can be done independently. It’s vital that reflux is addressed because, over time, stomach acid attacks the oesophagus and increases the risk of cancer. Reflux may have an impact on teeth as stomach acid will attack them too, so teeth-brushing and regular trips to the dentist are a must.

Some children are born with abnormalities of their digestive tract, while cleft lip or palate affect children’s ability to eat and drink. Conditions like epilepsy may affect eating directly, during a fit, or indirectly because medication may interfere with swallowing. With all eating and drinking difficulties there is a risk that children become malnourished or dehydrated, with knock-on effects on their health and well-being.

By far the biggest risk, however, is choking, when food goes down the wrong way and blocks the airway. This is potentially fatal – and sadly choking is the leading cause of premature death among people with learning disabilities. Two particular risk factors for choking are cramming food into the mouth and eating too quickly, behaviours which are common among people with multisensory impairment, perhaps because they need extra sensory feedback. Families and support staff all need strategies to avoid choking and know how to deal with it if it happens.

As the above indicates, there is a wide spectrum of difficulties and risks and therefore different challenges for families. Children with low to moderate difficulties may need only minimal support to enjoy their food, perhaps special positioning, support for their jaw, or specially-designed spoons, cups and so on. Some children eventually eat independently. Other children with more complex difficulties need intensive and skilled support to eat safely and may never be able to eat by themselves. Even so, with the right professional support, families can help their children to get as much enjoyment as possible from food and drinks.

Tube feeding – an imperfect solution

Many babies with complex disabilities start life being fed by nasogastric tube then progress to a gastrostomy tube which delivers specially formulated food direct into the stomach or gut. Undoubtedly tube feeding of whatever sort gives children the calories and nutrients they need to thrive but there’s a down side to this too. “Tube feeding is a very emotive topic for parents,” says Heather Trott, MSI Consultant (Speech and Language Therapist) based at the Woodside Family Centre. “It’s disheartening for all parents if they can’t feed their child normally. Partly it’s a social thing – they go out to friends and baby is plugged in to her pump while everyone else is enjoying eating. “But some parents welcome it with a sense of relief. As one parent said: “She used to be so tiny. Tube feeding has helped her put on weight. She wants to do more, it’s improved her development, she’s not as tired and she reaches out for toys more.”

As Lydia Howarth says, helping your baby to gain weight “consumes you” as a parent not least because “if your child doesn’t grow, what does it say about you as a parent?” Even so, tube feeding is a mixed blessing. “Adam was linked to his feed pump for 20 hours a day when he was tiny,” Lydia recalls. “Despite that he could still be sick, often dozens of time a day. As a baby he got very distressed if I left him and he learned pretty quickly that the best way to get my attention was to be sick. In the end I had to take him everywhere with me, attached to his feed pump, even to the toilet!”

As many families point out, it’s very difficult to go anywhere with a child who is tube fed or to leave them with other people who would ‘freak out’ at the thought of dealing with it. There’s an impact on other members of the family too. As one parent put it: “We can never be spontaneous – everything has to be planned and it’s often easier to just stay at home, which isn’t fair on her brother.”

And, of course, tubes can come out. Children can easily dislodge a nasogastric tube then the child has to be held still while the tube is reinserted, which can be distressing for children and parents alike. It’s harder to pull out a peg which is usually secure underneath the child’s clothing but it does happen. “Adam has pulled the tube out many times and you find a distressed child soaked in milk,” says Lydia. “When this happens local hospitals often have no idea what to do so you end up, in our case, having to go to Great Ormond Street Hospital.” But by the age of five, Adam was linked to his food pump overnight so day times at least became more relaxed.

Another emotive issue is blending home-cooked food for tube feeding. As Heather Trott points out: “There’s a natural wish to include the child in ordinary family life by giving them what the family eats. Obviously there are risks with this, either that the food is not sufficiently nutritious or that it blocks the tube. But there’s also anecdotal evidence suggesting this is possible. In the USA this is often the ‘done thing’ – it’s legal and supported by professionals – and some UK parents are aware of that. In the UK, medical professionals are unable to advise and promote this method without a stronger evidence base.

What do the children themselves think of being fed in this way? Some children are unaware they’ve got a tube inserted and can carry on playing even when they’re linked to the feed pump. If they can’t see how others eat, or if they have severe learning difficulties, they may not realise they are ‘different’. It wasn’t a big issue for Adam, according to Lydia as “He’s quite self-content.” But Heather has met one three-year-old with CHARGE who understands her situation – she knows she can’t swallow normally and that she has to sit still while the tube is in.

Developing a relationship with ‘real’ food

It may seem odd to think about food as a ‘relationship’issue but experts certainly see it that way. Most of us love food – the different colours, tastes, textures, smells, the fact that it’s often eaten among family or friends. Sharing food is an important part of family and social relationships and, of course, it’s a key factor in big occasions like weddings, Christmas, festivals and so on. But if we love food it’s because we’ve had good experiences of it from an early age – and that’s not so with many disabled children. As Heather Trott points out: “If you’ve had a tube in the back of your mouth for years, food can be off-putting. Children can reject food they don’t trust – and that can be most food. For example, one little girl aged one with CHARGE will feed her dolly and feed her Mum but she won’t put food in her mouth. She has had a nasogastric tube since birth and her Mum has to re-insert the tube frequently so she’s had unhappy experiences.”

Lydia thinks that Adam’s experiences of food also played a big factor in getting him used to eating orally. “He was very resistant to food in his mouth because he used to be sick every time. And his gag reflex was much further forward in his mouth than with other children – he would gag when food was at the tip of his tongue. He needed a lot of therapy to get the gag reflex further back in his mouth before he could tolerate food. I sometimes had to be very patient to get the spoon in his mouth too. It’s not surprising that he has a complicated relationship with food.”

The impact of sensory loss

The things we eat vary immensely – foods may be soft/hard/chewy/dissolve on the tongue/ sweet/sour/salty/crunchy/ bland/spicy/fibrous/slippery/rubbery/flaky, they may be hot/cold… And it’s our vision that enables us to anticipate what to expect from food and drinks: “We eat with our eyes first,” as April Winstock points out in her seminal work on eating difficulties 3. Heather Trott stresses this point when training people.“We put blindfolds on them then present them with different foods and the reactions are always interesting. When people can’t see the food coming to their mouth, they don’t know what to expect. They have to trust the person giving it to them. You can see that it can take quite a while to work out what some things are, chocolate for instance.”

So children with impaired vision need particular support to enable them to understand and enjoy food, which is of course even harder if their hearing is impaired as well. It’s not surprising that aversion to food can also be linked to certain textures – indeed we’re probably all guilty of this. Not every child likes jelly or even ice cream!

To complicate matters for children with CHARGE, they often have little sense of smell, so they don’t anticipate food from its delicious smells – and, as Lydia points out, “Children who are tube fed are never hungry so there’s no incentive to eat.”

Learning to eat

Whatever the challenges, it’s always worth persevering to get children and young people to eat ‘proper’ food– few people need to be eating ‘baby food’ in adult
life. But overcoming their resistance may require a lot of professional support. Lydia is full of praise for the specialist team at Great Ormond Street Hospital who
dealt with Adam’s physical difficulties (including the gag reflex) and showed her how, with patience, foods could be introduced. “I was scared at first because he’d never swallowed before,” Lydia recalls. “From the ages of one to seven he had varying amounts of food by mouth with lots of therapy from the feeding team. It would often take us 20 minutes to get half a pot of Petit Filous into him and often he’d vomit it straight back.”

Gradually however the therapy worked. Adam stopped tube feeding when he was seven and progressed to a mushed-up diet that he can swallow without chewing. “Learning to chew is the next stage,” says Lydia, “but it’s much better already because we can go to restaurants and almost always find something he can eat.”

Adam has enough vision to see his food but for children with severe sensory loss, learning to eat means using the only sense they’ve got – touch. “They need to feel their food and how it behaves, even if that involves squashing strawberries in their hands until the juice runs down to their elbows!” says Steve Rose. “Hand-underhand exploration can be a way to start this. But it can be difficult for some parents to accept this because it’s taboo to play with your food!” Heather Trott finds that many families are receptive to the idea however: “Families are often desperate by the time this stage is reached! But not every family can cope. One Mum said, ‘I know I should be doing this but I can’t stand the mess at home! It’s fine in school or at the day centre’”.

A typical programme for introducing a child to food through touch would involve structured play with food, introducing different textures and encouraging the child
to experiment. This is done very non-confrontationally, with no pressure to eat and an emphasis on fun. Heather says: “It can take ages for this to work but often it does. It may depend what else is going on for the child – what developmental stage they have reached, and what other difficulties they have had to deal with. One little boy I supported took seven months to start putting some foods in his mouth and taste them.”

Becoming independent

It’s very easy for families to become focused on getting enough food into their child and not think about their longer-term development according to Steve Rose.
Choice and independence are two key aspects of becoming adult.The concept of choice can be introduced at mealtimes, perhaps using cues like pictures to help a
child with some vision to decide what they want to eat. Chewing may need to be a taught skill, as noted above. Children can also be supported to feed themselves, starting with finger foods and progressing to things that need a spoon and so on.

Families should not be surprised if their child is less fussy about food and more capable at nursery or school, according to Heather Trott: “At home, food is often
an area where children assert some control over the adults!” Lydia Howarth has discovered that, with Adam, it sometimes works to try new things first at school, then introduce them at home. Adam’s progress may be very slow but it’s sure. “He went to a party recently and though he couldn’t eat the pizza and so on he did eat a few things off the serving plates and we were really pleased,” says Lydia. She is looking forward to the day he’ll master the art of chewing. “I’ll love it when he asks for a bag of crisps,” she laughs. We’ll drink to that.

Tips for families – from professionals and other families

1. If your child has difficulties eating and drinking, don’t struggle on your own. Ask your GP or paediatrician for a referral to a speech and language therapist (SLT). They prioritise eating and drinking problems so you should not have to wait long before seeing someone. You can also get support from Children’s Specialist Services
2. Make sure you understand the reasons for any advice you are given by the SLT. If they suggest a certain diet or position, there will be a good reason for it.
3. Don’t let food become a battleground. Children learn very quickly that food can be used to control adults! If you force food on them, you’re creating a problem so don’t react if they reject food. Just give them opportunities to try things.
4. If eating is difficult, it can be very stressful for your child – and for you too. Keep mealtimes as calm as possible – turn off the TV and the mobile phone or other distractions and calm any boisterous siblings.
5. Allow plenty of time for meals – rushing things is often a source of stress.
6. Establish good communication around food and mealtimes. Find simple ways for your child to indicate “I want more/I’m full.” If your child has some vision, show them pictures of food they can choose from; use their sense of smell to tempt them.
7. Teach your child that other people need food too, perhaps by letting them feel your face/throat when you chew/swallow something. Feeding the teddy bear/doll is another way to indicate the importance of food to everyone.
8. Mealtimes are precious social occasions when family/friends can be together, sharing food and chatting. As far as possible try to include your child in this. They may learn much about eating, drinking, turn-taking in conversation, independence skills, social skills and more.

First aid training will give you the confidence to cope if your child chokes.

Glossary

Dysphagia – the medical term for swallowing difficulties.

Gastrostomy – a surgical procedure to make an opening into the stomach and insert a tube for feeding. The most common approach is a percutaneous endoscopic gastrostomy (PEG) and the tube inserted is often called a ‘peg’.

Hiatus Hernia – when the top of the stomach bulges up through a weakness or tear in the diaphragm. There may be few symptoms but usually this makes it uncomfortable to eat.

Nasogastric Tube – a feeding tube that is passed up the nose and down into the stomach.

Oesophagus – the food pipe that connects the mouth to the stomach.

PEG – see gastrostomy above.

Reflux – bringing food up after it’s been eaten. The regurgitated food may only come a short way up the oesophagus or, in severe cases, it may reach the mouth or be vomited.

Rumination – chewing food that has been regurgitated into the mouth.

References

1. Steve Rose (2011). The challenge of mealtimes for children with CHARGE syndrome. Proceedings of the 21st Century CHARGE conference, Reading 2011
2. Eating and drinking issues in CHARGE syndrome. Unpublished paper.
3. Elsbeth AC Calis et al (2008).Dysphagia in children with severe generalized cerebral palsy and intellectual disability. Developmental Medicine and Child Neurology, vol 50, issue 8. See online at: http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2008.03047.x/full
4. Winstock (2005). Eating and drinking difficulties in children: a guide for practitioners. Bicester, Speechmark Publishing