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Gastrostomy feeding for children

Last update: 28 Nov 2016

► Children with cerebral palsy often have difficulties with eating, drinking and swallowing
► Sometimes a gastrostomy is used with children with significant eating, drinking and swallowing difficulties to ensure they receive enough food and drink. It is a form of enteral feeding, where food is delivered directly into the stomach. Gastrostomy involves surgical placement of a feeding tube through the abdominal wall into the child’s stomach
► Families considering gastrostomy feeding may have the support of a specialist feeding clinic or multidisciplinary team

Who is it for?

Gastrostomy feeding may be suitable for adults and children with cerebral palsy who have significant difficulties with eating, drinking and swallowing, and who have the following characteristics:
Age: Infants and Toddlers, Preschoolers, School-aged, Adolescents, Adults, Older adults
Type of cerebral palsy : Bilateral cerebral palsy, Diplegia, Hemiplegia, Quadriplegia, Unilateral cerebral palsy

More information about cerebral palsy is contained in the What is CP? section.

Mobility : GMFCS I, GMFCS II, GMFCS III, GMFCS IV, GMFCS V

Gross Motor Function Classification System (GMFCS) – classifies severity of mobility difficulties of children and adolescents with CP.

GMFCS Level I
Walks without limitations in the home and community, climbs stairs and can run and jump, difficulties with speed and coordination.

GMFCS Level II
Walks with limitations, difficulties with long distances and uneven surfaces, uses a railing for climbing stairs, limited running and jumping.

GMFCS Level III
Walks using a hand-held mobility device such as crutches or walking frame, may use wheeled mobility for long distances.

GMFCS Level IV
Usually relies on wheeled mobility with assistance, may use powered mobility, usually needs special seating and assistance with transfers.

GMFCS Level V
Usually transported in a manual wheelchair, requires specialised seating and full assistance for transfers.

Arm ability : MACS I, MACS II, MACS III, MACS IV, MACS V

Manual Ability Classification System (MACS) – classifies severity of upper limb impairment: how children with cerebral palsy use their hands to handle objects in daily activities in the home, school, and community settings.

MACS Level I
Handles objects easily and successfully.

MACS Level II
Handles most objects but with somewhat reduced quality and/or speed of achievement.

MACS Level III
Handles objects with difficulty; needs help to prepare and/or modify activities.

MACS Level IV
Handles a limited selection of easily managed objects in adapted situations.

MACS Level V
Does not handle objects and has severely limited ability to perform even simple actions.

Communication ability : CFCS I, CFCS II, CFCS III, CFCS IV, CFCS V

Communication Function Classification System (CFCS) – classifies severity of everyday communication of people with cerebral palsy.

CFCS Level I
Effective Sender and Receiver with unfamiliar and familiar partners.

CFCS Level II
Effective but slower paced Sender and/or Receiver with unfamiliar and/or familiar partners.

CFCS Level III
Effective Sender and Receiver with familiar partners.

CFCS Level IV
Inconsistent Sender and/or Receiver with familiar partners.

CFCS Level V
Seldom effective Sender and Receiver even with familiar partners.

Movement disorder : Ataxia, Athetosis, Dystonia, Hypotonia, Spasticity

More information about movement disorders can be found on our websites.

Intellectual ability : No intellectual disability, Mild intellectual disability, Moderate intellectual disability, Severe intellectual disability

A person’s thinking skills – ability to understand ideas, learn and solve problems. People with intellectual disability have difficulty with intellectual functioning which may influence learning, communication, social and daily living skills. Intellectual disability may be mild to very severe.

Who can assist?

It is essential to work together with a specialised feeding clinic or multi-disciplinary team, which are often part of children’s hospitals. These teams may include a surgeon, paediatrician, gastroenterologist, speech pathologist, occupational therapist, respiratory specialist, dietitian and gastrostomy nurse. The team will work with the family to consider the benefits, risks and complications of gastrostomy feeding.

Cerebral Palsy Alliance offers services to children and adults who have eating and drinking difficulties.

Find a Cerebral Palsy Alliance service

Fees

Fees may apply for specialist services, feeding equipment and formula. Dietitians and specialist nurses in feeding clinic teams can provide information on how to purchase formulas and help register for funding programs to reduce costs.

Ask health providers if you are eligible for funding to assist with fees. People with a disability living in Australia may be eligible for a health care rebate through Medicare or funding from the National Disability Insurance Scheme.

More about gastrostomy

A gastrostomy is a feeding tube that is surgically placed through the abdominal wall, to feed formula, liquids and medication directly into the stomach. The tube usually has a balloon or disk placed under the skin that holds the tube in place. It also has a retention device (often called a button) on the outside of the skin to seal the tube between feeds.

Gastrostomy feeding may be an option when a child has swallowing problems (dysphagia), making it difficult for them to safely swallow food and drink, or when maintaining healthy rates of growth and nutritional wellbeing cannot be achieved by oral feeding alone.

When gastrostomy feeding is used

Depending on individual need, gastrostomy feeding can be used to provide all of a child’s nutritional requirements, or to supplement oral feeding. Supplemental feeding may be useful when a child can manage food safely but not liquids, or can manage only small amounts of food or liquid orally. Gastrostomy tubes can also be used to take medication. Gastrostomy feeding is generally considered for children who require non-oral feeding in the mid- to long-term. Tubes can be removed if they are no longer needed.

Gastrostomy management

The procedure

The most common surgical technique for placement of a gastrostomy tube is called a PEG (percutaneous endoscopic gastrostomy).

Equipment

The equipment needed will depend on the type of gastrostomy, but typically includes:

  • Pump - a gastrostomy pump provides a consistent flow of formula through the tube for intermittent or continuous feeding. An alternative is a gravity drip used to give larger amounts of formula (called a bolus feed) over a shorter period of time, usually four to six times each day
  • Syringe - a syringe is used to give formula or medication quickly through the gastrostomy tube

Other equipment may be recommended by a dietitian and specialist gastrostomy nurse who can also advise on the type, amount and frequency of gastrostomy feeds.

Assessments

Before this procedure, families and clinicians work together to set goals, such as weight gain, improved health, nutrition and quality of life. Goal Attainment Scaling (GAS goals) can be used to measure the extent to which goals are achieved.

Considering gastrostomy feeding

Common concerns

Some families have concerns that gastrostomy feeding may reduce their child’s ability to enjoy family meals and celebrations. Others may feel that, by deciding to proceed with gastrostomy feeding, they are giving up on mealtimes1 and worry that their child’s ability to eat and drink orally will be lost2. There are also families who have reported that they were pleased that their child received a gastrostomy because of the positive effects. These included reduced time taken for meals; fewer lung problems; improvement of children’s weight, nourishment and general health - including lung health; and improved quality of their own lives3. Families also reported that they felt less anxious because their child was adequately nourished and able to take medication consistently, even when unwell3. Discussing concerns and practical issues with a feeding clinic team can help families make decisions. Another good option is to talk with other families who have been through a similar experience.

Things to note

  • Every child has individual needs and abilities which need to be taken into account when considering gastrostomy feeding to improve weight, growth, nutrition, respiratory health or quality of life.
  • Particular care will need to be taken with maintaining hygiene and care of the gastrostomy site after surgery, to avoid infection. The inflation of the balloon or disk that holds the tube in place needs regular checking to ensure it is working properly.

Best available research evidence

Where did we search?

We searched the medical and education literature to find research evaluating the outcomes of gastrostomy feeding for children with cerebral palsy.

What were we looking for?

This search aimed to find the best available evidence of whether gastrostomy feeding improves weight, growth, nutrition and quality of life.

What did we find?

Recent Cochrane systematic reviews, which evaluated the effectiveness of nutritional supplementation via gastrostomy to children with cerebral palsy4-5 did not identify any randomised controlled trials and noted that there is ‘considerable uncertainty about the effects of gastrostomy for children with cerebral palsy4. Other studies, and systematic reviews that have drawn on lower level evidence, have reported variable outcomes.

Overall, these studies provide low quality evidence that there are benefits but there may also be risks to a gastrostomy. For some children, gastrostomy feeding may be critical in ensuring adequate nutrition and/or weight. Families considering options to assist with nutrition, eating and drinking for their child are encouraged to speak with their doctor or a specialist feeding clinic about the suitability of gastrostomy feeding and other feeding interventions.

Gastrostomy may improve a child’s health

Some studies suggest that, for children with cerebral palsy, gastrostomy feeding may assist with weight gain6-7, improve nutrition and reduce the frequency of respiratory illnesses, as well as resulting in improved caregiver satisfaction1,7 and quality of life8.

There may be some risks when having a gastrostomy

Adverse outcomes may result from having a gastrostomy. These include skin irritation, granulation (microscopic blood vessels that grow around the stoma), infection and leakage, which are usually able to be resolved with good hygiene practices and minor medical intervention9-11. More significant complications may arise but the incidence is generally low11. There are inconsistent findings in relation to gastroesophageal reflux after a gastrostomy. Some7, but not all, studies9-10 report that some children with cerebral palsy develop new, or have continuing or worsening gastroesophageal reflux after a gastrostomy, some requiring further surgical procedures and some with life-threatening complications. The risk of aspiration pneumonia, for instance, may be greater in the presence of reflux7. There is some evidence that the benefits and risks arising from having a gastrostomy are similar, regardless of the age of the child11.

Research is just one piece of evidence that should inform the use of interventions. A gastrostomy will work well for some people with cerebral palsy but will not be right for everyone. The fact that little and inconclusive research has been completed about the effects should not deter people with cerebral palsy, their families, caregivers and health professional from considering whether a gastrostomy may be a worthwhile consideration.

Date of literature searches: July 2016

  1. Craig, G.M., Carr, L.J., Cass, H., Hastings, R.P., Lawson, M., Reilly. S,, et al. (2006). Medical, surgical, and health outcomes of gastrostomy feeding. Developmental Medicine and Child Neurology, 48(5), 353-60.
  2. Craig, M.G., Scambler, G., & Spitz, L. (2003). Why parents of children with neurodevelopmental disabilities requiring gastrostomy feeding need more support. Developmental Medicine and Child Neurology, 45, 183-188.
  3. Matuszczak, E., Hermanowicz, A., Klek, S., Komarowska, M., Pawlowska, D., Zoubek-Wojcik, A., Debek, W. (2014). Parents’ Perceptions of gastrostomy feeding for children with neurological disabilities. A multicenter study. Journal of Hospice and Palliative Nursing, 16(8), 521-525.
  4. Gantasala, S., Sullivan, P.B., & Thomas, A.G. (2013). Gastrostomy feeding versus oral feeding alone for children with cerebral palsy. The Cochrane Database of Systematic Reviews. Jul 31;7:CD003943. doi: 10.1002/14651858.CD003943.pub3. Click link to pdf from here
  5. Sleigh, G., Sullivan, P.B., & Thomas, A.G. (2004). Gastrostomy feeding versus oral feeding alone for children with cerebral palsy. The Cochrane Database of Systematic Reviews. CD003943. Click link to pdf from this page
  6. Ferluga, E.D., Sathe, N.A., Krishnaswami, S., & McPheeters, M.L. (2014). Surgical intervention for feeding and nutrition difficulties in cerebral palsy: A systematic review. Developmental Medicine and Child Neurology, 56(1), 31-43.
  7. Sleigh, G. & Brocklehurst P. (2004). Gastrostomy feeding in cerebral palsy: A systematic review. Archives of Disease in Childhood, 89(6), 534-9.
  8. Sullivan, P.B., Juszczak, E., Bachlet, A.M.E., Thomas, A.G., Lambert, B., Vernon-Roberts, A., et al. (2004). Impact of gastrostomy tube feeding on the quality of life of carers of children with cerebral palsy. Developmental Medicine and Child Neurology, 46(12), 796-800.
  9. Kehar, M., Upadhyay, S., & Wadhwa, N. (2014). Percutaneous endoscopic gastrostomy in children: Experience from single center of a developing country. Journal of Nepal Paediatric Society, 34(2), 125-131.
  10. Kakade, M., Coyle, D., McDowell, D. T., & Gillick, J. (2015). Percutaneous endoscopic gastrostomy (PEG) does not worsen vomiting in children. Pediatric Surgery International, 31(6), 557-562. See abstract
  11. Szlagatys-Sidorkiewicz, A., Borkowska, A., Popinska, K., Toporowska-Kowalska, E., Grzybowska-Chlebowczyk, U., Wernicka, A., Kierkus, J. (2016). Complications of PEG are not related to age – The result of 10-year multicenter survey. Advances in Medical Sciences, 61(1), 1-5.
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