Home enteral tube feeding case discussions and the importance of working with family needs
Over the last 5-10 years there has been an increase in the number of children being enterally tube feed, this has led to an increase in children being discharged home on tube feeds and as medical complexities progress the feeding can become more challenging. (1) As dietitians our role is to support the young person nutritionally but also to support the family. Whilst we want to ensure the young person grows and thrives, we need feed plans to fit around family life with the minimal burden of care being placed on families.
Looking back at the literature around paediatric home enteral feeding over the last 5 years, there has been a significant focus on children who are fed using blended diet. The benefits of blended diet are well documented, reducing symptoms of reflux and improving stooling, often reducing reliance on medication alongside these improvements. (2) While blended diet is demonstrating a lot of benefits, there are some patients that it will not be suitable for. The purpose of this article is to explore these patient groups and demonstrate alterative strategies to optimise growth and development while having a minimal impact on family life.
Case study 1
Reasons for referral:
L is a young lady who was referred to paediatric dietetics within her neonatal period, she was born at 32 weeks gestation. L required respiratory support at birth and has an ongoing home oxygen requirement which the team have been unable to wean. L has never been able to feed orally due to an unsafe swallow and has been fed via a nasogastric tube since birth. L has significant chest issues with multiple intensive care admissions each year which require periods of ventilation to support her.
L is now 3.5yrs of age and there have been multiple discussions within the team regarding the benefits of a gastrostomy for L. However, due to the high risk of complications from the general anaesthetic and the post operation recovery in terms of her chest health, the family have never felt they were willing to go through elective surgery.
L struggles with reflux, she vomits around 8-9 times daily and in turn struggles with weight gain. L has issues with constipation and is currently on laxatives to try and improve this. There is also concern around the aspiration risk with vomiting. There has been discussion around the benefit of attempting a nasojejunal tube to reduce vomiting and minimise aspiration risk, however L dislodges her tube regularly and parents are reluctant to consider a bridle.
L has been on a variety of feeds including whole protein, hydrolysed and elemental to see if the symptoms improve, but there has been poor tolerance of all feeds with elemental feeds causing significant loose stools due to the high osmolality.
Additional factors:
L is fed using a feeding pump but is unsafe to be on the pump unsupervised overnight due to the risk or aspiration or strangulation from feeding equipment, this has meant we have had to feed only in daytime hours when she can be supervised to ensure safety.
L enjoys nursery, she is taken to and from nursery by a taxi and the feed pump is not able to be connected while she is being transported. Parents also report L cannot be fed about 1hr before transport in the taxi as this increases her risk of vomiting. L enjoys her time at nursery, she takes part in hydrotherapy and has daily physiotherapy sessions, and she can’t be on her feeding pump during this time.
We also need to consider that the family need to sleep and that overnight feeds without supervision are not deemed safe. A gastrostomy tube would make overnight feeding a possibility, however this is not an option for the family.
All of these factors limit our options for feeding L. We want to get adequate calories to enable growth while ensuring she is free from the pump during the day to enjoy her activities and be transported to and from school.
Dietetic plan and outcome:
A plan was developed using a high calorie (2.4kcal/ml) nutritional supplement to meet her nutritional requirements. By using the high calorie supplement, we were able to keep feed volume to a minimum and this helped improve tolerance. Extra water was added to meet fluid requirements, feeds were given via a feeding pump and time was factored in to ensure L could take part in the activities she enjoyed. Anti-reflux medication was also optimised which helped reduce the vomiting and parents were able to manage symptoms better by ensuring L was upright post feeds and adjusting the pump rate based on tolerance.
L thrived on the new feed plan. While as clinicians we would have opted for an alternative method of feeding such as a gastrostomy, we had to respect the family’s decision and work around the time constraints from activities to ensure we came up with a feed plan that meet everyone’s needs. As L was fed via a NGT, blended diet which may have helped the vomiting and constipation was contraindicated.
Case study 2
Reasons for referral:
T was a young man who was referred to dietetics around 4m of age. He had been struggling with reflux throughout infancy and had been managed within primary care. He had been a term infant with a healthy pregnancy and delivery.
T presented with faltering growth having dropped from the 75th centile to the 2nd centile at 4m of age. He was vomiting up to 20times daily, often projectile and effortless. He was described as being uncomfortable and preferred being upright post feeds.
T was breast fed and mum had tried a dairy and soya free diet to see if symptoms improved however his vomiting continued to be problematic. In view of the ongoing vomiting issues, Mum made the decision to trial an amino acid formula and stop breastfeeding to see if this helped improve the vomiting.
The decision to pass a nasogastric feeding tube:
At the age of almost 5months, T was reluctant to take the amino acid formula and in view of the weight faltering, the decision was made jointly with the family to pass a nasogastric feeding tube. The aim of this was to allow T to receive adequate calories to promote growth and in turn hopefully minimise reflux as he grew and developed.
The nasogastric tube was tolerated well by T, however he continued to vomit despite anti-reflux medications being optimised and feeds being thickened to try and reduce reflux.
The decision to pass a naso-jejunal feeding tube:
Weight continued to falter and following discussion with parents and the multi-disciplinary team, the decision was made to pass a naso-jejunal feeding tube with a bridle to secure. The aim with the NJ was to bypass the stomach and therefore reduce the vomiting enabling T to grow.
As the NJ was difficult to pass with not all staff being able to do this, the decision was made to bridle the tube to prevent T from dislodging the tube. In view of the concerns around potential cows milk protein allergy, the decision was made to start T on a hydrolysed feed which should be better tolerated than amino acid based feed when feeding into the jejunum. T tolerated the feed well and received his feeds via a feeding pump over 16hours a day.
The decision was also made by the team to start T on some solids as he was almost 6months and showing signs of readiness to wean. T had some initial aversion when being fed, however progressed well with a baby led weaning approach which would have made him feel more in control around feeding.
The outcome
T continued to be fed via his NJ until around 11months of age. At this point his intake of solid foods had improved significantly causing his reflux symptoms to reduce. He was taking some alternative milk by mouth, having a large volume mixed with foods to ensure his hydration levels were met.
Two weeks before his first birthday T bit a hole in his NJ. The decision was made at this time to review the tube and allow him to fed orally. He managed to sustain his weight on oral feeding and was able to stop all anti-reflux medications.
At the time of placement the NJT felt like quite a significant decision due to the complexities of passing the tube and the limitations of being attached to a feeding pump for long periods throughout the day to improve tolerance. However, on reflection this was the correct decision for T and his family as he has demonstrated catch up growth and been able to develop a healthy relationship with solid food with minimal aversion due to his reflux.
Conclusion
The options around enteral feeding are expanding for patients and as dietitians it is important we consider all options available to the families, and work closely with families to figure out what works best for them as a family unit while meeting the individual child’s nutritional needs
Hazel is a paediatric dietitian with 19 years' clinical experience in the NHS and freelance, with particular expertise in paediatric nutritional support, restricted diet, food allergies and gastrointestinal conditions such as IBS and IBD.
Hazel Duncan, RD
Paediatric Dietitian, Kids Nutrition
References
1. Braegger C, Decsi T, Dias JA et al. Practical approach to paediatric enteral nutrition: a comment by the ESPGHAN Committee on nutrition. J Paediatr Gastroenterol Nutr, 2010, 51(1) 110–122.
2. McCormack S, Patel K, Smith C. Blended diet for enteral tube feeding in young people: A systematic review of the benefits and complications. J Hum Nutr Diet. 2023; 36: 1390–1405. https://doi.org/10.1111/jhn.13143
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