Real food in enteral nutrition for chronically ill children: overview and practical clinical cases

Abstract

Background

Many feeding strategies may be used in chronically ill children on enteral nutrition. Interest is currently growing in real food-based enteral nutrition. A new tube feeding formula with real food ingredients is currently commercially available in Europe.

Case reports

By focusing on four clinical cases, this article illustrates the use of a tube feeding formula with real food ingredients in pediatric patients with various complex conditions. The formula contains a milk-based mixture of peas, green beans, peaches, carrots, and chicken, and provides 1.2 kcal/ml. It was offered under medical supervision and after full consideration of all feeding options.

Conclusions

Formula choice appears to be based on clinical experience and must be individualized to patients’ characteristics and needs. Real food-containing formulas seem to improve tolerance and feeding outcomes as well as promote family inclusion and mealtime engagement, but further studies are warranted.

Keywords:

• Blended
• blenderized
• children
• enteral formula
• enteral nutrition
• PEG
• real food

Introduction

Chronically ill children frequently experience swallowing difficulties secondary to neurological disability (ND), and/or developmental delay, requiring a lengthy start-up and long-term maintenance of enteral nutrition by tube^1,2. Tube feeding indications include optimizing nutritional status and growth, preventing undernutrition, maintaining hydration, supporting unpalatable diets (i.e. metabolic disease), improving medication adherence, reducing aspiration and gastroesophageal reflux disease (GERD)-related complications, and improving the health-related quality of life of children and their families^2,3. However, in most cases, the first indication for tube feeding is nutritional support, and the clinical benefit is evaluated in terms of nutritional improvement⁴. Tube feeding has been shown to be effective in preventing undernutrition in children with chronic disease^5–7, including ND, chronic cardiac disease, chronic renal failure, intestinal failure, and chronic inflammatory disease (i.e. cystic fibrosis)^8–11. Children with ND and cerebral palsy (CP) are the most involved, with up to 85% having feeding difficulties and significant gastrointestinal symptoms, and about three quarters being undernourished^8,12,13. The nutritional management of children with ND was outlined in the 2017 European Society of Gastroenterology, Hepatology, and Nutrition (ESPGHAN) consensus statement⁸, which provided recommendations on nutritional status assessment, diagnosis and treatment of major gastrointestinal symptoms, and, above all, the timing and modalities of nutritional intervention and rehabilitation. Many feeding strategies have been developed, and multiple approaches may be used in chronically ill children^1,2,8. Intragastric access via gastrostomy is indicated as the best route for long-term enteral nutrition since tube insertion is easier and bolus feeds can be used^2,8. The choice of the “best” enteral feeds should be individualized and chosen based on the patient’s age, underlying disease, nutritional requirements, and type of enteral access. After the age of one year, standard energy density (1 kcal/ml) polymeric age-appropriate formula including fiber is recommended as the initial enteral feed^2,8,14. A standard polymeric formula should be isocaloric, iso-osmolar (300–350 mOsm/kg), gluten and lactose free, and have a nutritional profile equivalent to that recommended for healthy children^14,15. Polymeric feed has been shown to be effective and usually well accepted, and it does not accentuate gastrointestinal symptoms such as constipation, gastroesophageal reflux (GER), and retching. Despite the fact that nutritionally complete commercial formulas are currently the most commonly used^8,14,16, blenderized tube feeds (BTFs) are gaining popularity among tube-dependent children^1,17,18.

Blended or BTF refers to the use of real blended foods and liquids given directly through the feeding tube, using blenderized formula, homemade blended formula, or puree¹⁹. BTF can refer to homemade blended food, commercial formula mixed with pureed baby food or commercially available real food products that are ready to use in tube feeding. The indications for starting BTF include (1) the age of at least 6 months, (2) the use of a > 14-French tube, and (3) the possibility that the patient is medically stable on a home enteral nutrition regimen with a mature gastrostomy site¹⁹. The benefits of BTF include (1) the exposure to real foods and tastes, (2) the ability to comply with dietary restrictions or preferences (dairy free, vegetarian, etc.), (3) the likely improvement in gastrointestinal symptoms like GER, bloating and constipation, and (4) the potential cost savings^1,18,19.

The BLEND study¹ was the first prospective study to investigate the feasibility of transitioning chronically ill children from commercial formula to BTF, and it showed that BTF can be safe and well-tolerated. However, as compared to commercial formulas, BTF was associated with increased energy, protein, fiber, and sodium supply, as well as increased bacterial diversity and species richness in the context of decreased Proteobacteria in stool. Indeed, the use of BFT via gastrostomy has been limited due to concerns regarding nutritional adequacy and safety (such as microbial contamination of enteral tube feeds)^1,19,20. Moreover, limited evidence exists on its efficacy in reducing gagging and retching in children after fundoplication^7,20. However, when compared to commercial standard enteral formula, BTF is perceived as “healthier” and “more natural”^17,18,21. A new tube feeding formula with real food ingredients is currently commercially available in the United Kingdom and some European countries. The formula contains a milk-based mixture of peas, green beans, peaches, carrots, and chicken, and provides 1.2 kcal/ml, 38% of proteins from chicken, peas, and green beans, 53% of fibers from vegetables and fruits, and 25% of the daily recommended servings of fruits and vegetables (per 1500 ml feed and based on WHO/FAO and EFSA nutrition intake goals >400 g/day). Literature data on tube feeding formula with real food ingredients use are scarce. An acceptability and tolerance study was conducted on 19 children aged 1–14 with different medical conditions including CP²². Participants were tube fed and given an enteral formula with real food ingredients for seven days. Sixteen participants completed the trial. Some participants reported improved stool consistency. Two subjects experienced relief from reflux and a progressive decrease in retching. One child’s mood, eye contact, and concentration improved²². A recent retrospective study was conducted on 10 children with intestinal failure aged >1 year who were transitioned from an elemental formula to a closely similar enteral formula with real food ingredients due to diarrhea or irregular stooling patterns²³. The study found that 90% of patients tolerated the enteral formula with real food ingredients and had an improvement in their stooling patterns²³. All patients had 30–40 cm of small bowel, an intact ileocecal valve, and at least two-thirds of their colons in continuity. Furthermore, the total cost savings from transitioning to a real food-based enteral formula were $11 per 1000 calories²³. The average monthly cost for elemental formula plus supplemental fiber is around $710, compared to $375 for real food-based enteral formula.

The present article describes four clinical cases involving the management of prolonged enteral nutrition in patients with various complex conditions using a tube feeding formula with real food ingredients. The same formula was used in all cases. These are selected clinical cases among others in Italy, but the product has also been safely and efficiently used elsewhere^24,25.

Ethics statement

The study was approved by the ethics committee of the "Bambino Gesù" Children Hospital (protocol number 2701/2021). Informed consent for the publication of the present case reports was obtained from the parents/legal representatives of the four children.

Case reports

Case report 1

Case description

A 22-month-old girl was diagnosed with nemaline myopathy, which is caused by a homozygous missense truncating mutation in TNNT1. Her older sister had the same mutation and disease, and both parents had a single mutation of the gene. Progressive and severe muscle weakness and wasting, respiratory insufficiency, pectus carinatum deformities, and failure to thrive manifested by the age of four months. For these reasons, she was admitted to the hospital at the age of 19 months and given a tracheostomy and a percutaneous endoscopic gastrostomy (PEG). She began to be ventilated mechanically 24 h a day. She was also started on a special diet consisting of blended natural food via PEG and nocturnal enteral nutrition consisting of 240 ml of a semi-elemental formula delivered at a rate of 30 ml/h for 8 h. No complications (i.e. gastrostomy tube obstruction, microbial contamination episodes) were observed with the use of blended natural food. The semi-elemental formula was not tolerated; thus, an amino acid-based formula was chosen instead.

Clinical course, treatment and outcomes

The girl was admitted to the hospital for the second time at the age of four for recurring abdominal pain, bloating, diarrhea, and failure to thrive (weight and length <5°Centile). Allergy tests for milk and wheat (total and specific IgE) were negative. It was decided to start using a tube feeding formula with real food ingredients. Water supplementation was provided to meet fluid requirements. Following the introduction of the real food-based formula, abdominal pain, bloating, and diarrhea were relieved. Growth remained unsatisfactory, but failure to thrive is a typical sign of this myopathy and it is difficult to correct. Laboratory data showed the absence of macro- and micro-nutrient deficiencies. Resolving symptoms such as recurrent abdominal pain, bloating and diarrhea in these patients can be considered a significant treatment success with a beneficial influence on quality of life.

Case report 2

Case description

A newborn was admitted to the hospital due to complex cardiopathy and esophageal atresia diagnosed during pregnancy. He had surgery to close the tracheoesophageal fistula on his second day of life; three days later, he had another surgery to perform an esophageal-esophageal anastomosis, which resulted in esophageal stenosis. He started enteral nutrition with a semi-elemental formula delivered through a nasogastric tube, which he tolerated well. During the hospital stay, bloating appeared, along with a rapid deterioration of general conditions and the onset of respiratory distress. A subtotal necrosis of the small bowel and of the colon was discovered, necessitating a total resection with a jejunum-colic anastomosis. Consequently, he developed short bowel syndrome and became fully dependent on parenteral nutrition. In addition, two heart surgeries were performed, as well as a pulmonary artery bandage and subsequent interventricular defect repair. The patient had numerous esophageal dilations with the Savary-Gilliard dilator. Both enteral nutrition by nasogastric tube and parenteral nutrition helped to maintain a good nutritional status.

Clinical course, treatment and outcomes

At the age of three, a Nissen-fundoplication was performed to manage GERD, and a PEG was placed. General conditions were good, but there was a growth delay. Therefore, two months later, it was attempted the replace of the semi-elemental formula with a new enteral formula containing real food ingredients, together with water supplementation to meet fluid requirements. The formula was well accepted, and there was an improvement in growth, as seen by weight and length increases of 1.5 kg and 7 cm over the next 13 months. Macro- and micro-nutrient blood levels were normal.

Case report 3

Case description

A 2-month-old girl was taken to the hospital with a cough and an unexplained cry. Bordetella pertussis infection was found. A Cytomegalovirus (CMV) congenital infection was also diagnosed based on clinical signs (microcephaly and failure to thrive), urine-PCR positivity, and maternal pattern antibodies during pregnancy. A brain magnetic resonance imaging study revealed the presence of lesions consistent with congenital CMV. Seizures occurred during the hospital stay. Epilepsy and double hemiparesis were diagnosed, and both carbamazepine and a physiotherapy program were started.

Clinical course, treatment and outcomes

Due to vomiting, a lack of appetite, and failure to thrive, a gastric scintigraphy was performed, which showed slowed gastric emptying and GERD. For these reasons, the patient had gastric fundoplication, pyloroplasty, and gastrostomy at the age of two months. It was started a nocturnal enteral nutrition using a semi-elemental formula, with natural foods offered throughout the day. A new enteral formula with real food ingredients was introduced at the age of three months due to poor weight gain and abdominal pain during meals. After 18 months, she had gained 15 cm and 4 kg, and her abdominal pain and failure to thrive had resolved. Laboratory data showed the absence of macro- and micro-nutrient deficiencies. The formula was well accepted, both nutritionally and symptomatically, with satisfactory weight-for-height development and resolution of reflux-like symptoms. Water supplementation was provided to meet fluid requirements.

Case report 4

Case description

A newborn underwent several surgical procedures to correct a laryngotracheal cleft, microgastria, and partial pylorus stenosis. A tracheostomy was placed due to the difficulty of extubation. The development of a brain hemorrhage, which resulted in multicystic encephalomalacia, worsened the situation.

Clinical course, treatment and outcomes

A few months later, a percutaneous endoscopic jejunostomy (PEJ) was placed, and the patient began a well-tolerated enteral nutrition regimen using a standard polymeric formula. She also tried additional oral feeding, but she had several ab-ingestion pneumonias as a result. Consequently, she had a Nissen fundoplication at the age of two and a gastric-jejunum bypass without anti-reflux surgery at the age of three. A videofluoroscopy one year later revealed the recurrence of the laryngotracheal cleft. After that, a PEG/PEJ was placed, and enteral nutrition with a semi-elemental formula was started with good tolerability. Two years later, due to severe constipation, she switched to the new enteral formula containing real food ingredients. The formula was well tolerated, as evidenced by daily spontaneous evacuations and the absence of pulmonary complications. To increase her caloric intake, a hypercaloric, semi-elemental formula was supplied via the jejunal route. Water supplementation was provided to meet fluid requirements.

Discussion

There are many nutritionally complete, age-appropriate enteral formulas available for children who require enteral nutrition after the age of one year, and there is currently no consensus on which formula is best. Formula choice appears to be based on clinical experience and must be individualized to the characteristics and needs of the patients²⁶. Parents and caregivers of children on prolonged tube feeding are becoming more interested in real food-based enteral nutrition, including BTFs and commercial real food-containing formulas²¹. Parents often choose BTFs after researching their options online and for a variety of reasons, including the opportunity to serve foods with natural composition, intimate experiences for parental nurturing, and the benefits of family inclusion and mealtime engagement. Transition to BTF should be done under the supervision of a medical team/dietitian with experience to monitor for fluid/micro- and macro-nutrient deficiencies and for appropriate laboratory testing until established. Nonetheless, barriers to providing BTFs via gastrostomy exist in the clinical setting^1,8: (1) teaching families how to prepare BTFs from jarred baby foods or table foods reconstituted to puree consistency with a high-performance blender takes time and requires extensive preparation and close monitoring; (2) safety concerns about the use of BTFs still exist, such as the risk of food particles obstructing the gastrostomy tube and microbial contamination; (3) there is a risk of macro- and micronutrient deficiencies due to the inability to assess crude nutrient intake from day to day in patients at high risk (i.e. intestinal failure or ND) and suboptimal compliance with daily vitamin and mineral supplementation. Commercially available tube feeding formulas containing real food ingredients appear to be a cost-effective and nutritionally appropriate means of providing real food-based enteral nutrition to chronically ill children^23–25. The use of these formulas may improve the stooling pattern in this patient population for several reasons, including (1) ingesting complex whole food nutrients, (2) varying fiber type and amount, (3) altering fat type, and (4) modifying the gut microbiome (through fibers and various plant-based carbohydrates)^1,24,25,27. Furthermore, such formulas containing real food ingredients may stimulate taste receptors in the gastrointestinal tract, which can transmit sensory information to many effector systems involved in immune responses and gastrointestinal motility^25,28. Following activation by foods, some receptors seem to trigger an intestine–brain–stomach circuit that induces a feedback blockade of gastric motility to regulate the pulsatile rhythm of food entry into the intestine²⁹. Another advantage of using these commercial formulas is that they are sterilized products that are aseptically packaged and hermetically sealed, making travel easier in terms of “feeding on the go” and storage safety.

There is a paucity of data in the literature on the use of these types of formulas. Further studies are needed to evaluate the nutritional and health benefits, as well as the cost-effectiveness, of real food-based enteral formulas. The extension to larger-scale, specifically addressed studies (i.e. real food-based formulas versus home BTFs, or real food-based formulas versus other commercially available enteral formulas) is warranted. In the coming years, studies will better define the pathophysiological mechanisms underlying the risk of malnutrition and macro- and micro-nutrient deficiency in chronically ill children, and will most likely stimulate the trend to enhance the use of ingredients derived from real food and nutrients as more physiologic in terms of tolerance and safety, even as a first-line nutritional approach. The goal could be better compliance with nutritional support for this group of patients, as well as increased satisfaction among their parents and family.

Conclusions

In conclusion, commercial formula containing real food ingredients can be considered as a valid option in pediatric tube feeding management. These four cases focused on the feasibility and tolerability of a tube feeding formula with real food ingredients in a variety of complex diseases, including neurological and neuromuscular diseases, genetic syndromes, and gastrointestinal conditions (i.e. short bowel syndrome). The composition of this special formula with a specific caloric intake (1.2 kcal/ml) can increase the real caloric intake with good tolerance. It can also support intestinal motility (GER, vomiting and constipation) and other symptoms (abdominal pain, bloating and diarrhea), as well as promote adequate weight-for-height gain. Further larger-scale prospective studies are needed to assess the nutritional and health benefits and cost-effectiveness of real food-based enteral formulas.

Transparency

Declaration of funding

The authors retained the editorial process, always including the discussion. There was no financial reward associated with writing the paper. Nestlé Health Science S.A. provided funding support for open access publication fees. The views and opinions expressed are those of the authors.

Declaration of financial/other relationships

The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Author contributions

All authors: conceptualization, data curation, investigation, provision of resources, supervision of patients, validation of results, data visualization, article writing, review and editing. All authors reviewed and approved the final version of this manuscript.

Acknowledgements

Authors thank the children and their families, and the healthcare professionals at the affiliation centers.