SickKids-led study shows success with a blenderized diet for children with G-tubes
A SickKids-led collaborative study with Children’s Hospital of Eastern Ontario (CHEO) has shown the benefits of switching gastrostomy tube (G-tube)-fed children from commercial formula to homemade puréed food.
A G-tube allows children who either cannot eat anything orally, or cannot eat enough orally to receive the calories that they need, to appropriately grow and thrive. This is done by delivering nutrition directly to the stomach, bypassing the mouth. There are various patient populations who may require G-tube feeds, including patients with cerebral palsy, genetic syndromes and congenital heart disease. The standard type of feeds that this patient population receives is commercial formula.
"Some children don't react well to formula and have gastrointestinal symptoms such as gastroesophageal reflux, retching, gagging, vomiting and diarrhea or constipation,” says the study’s principal investigator, Dr. Margaret (Peggy) Marcon, Staff Gastroenterologist at SickKids. "We wanted to provide additional feeding options for families of G-tube-fed children with the hope that it would increase overall family satisfaction and quality of life. Our goal is always to be family-centred and to provide the best possible evidence-based care to our patients. Because of this we felt that we needed to lead the way with this novel research study. ”
This was the first feasibility study on feeding puréed food, known as blenderized tube feeds (BTF). Twenty study participants ranging in age from 1 to 16 years were introduced to a SickKids-created blenderized enteral nutrition diet (BLEND) over a period of six months. The results were published in the Journal of Parenteral & Enteral Nutrition on Jan. 16.
Marcon’s team concluded that transitioning medically complex children onto BTF was successful and that the prevalence of vomiting and use of medication that helps reduce reflux symptoms significantly decreased on BTF. They found that the nutritional value of BTF was comparable to commercial formula and that the fibre content was far superior to commercial formula, providing an average of 6.3 times more fibre. Dr. David Mack’s team at CHEO discovered that microbiome diversity and richness in stool samples significantly increased and that there was a decrease in a bad bacteria (Proteobacteria) when BTF were introduced. This suggests that the use of BTF could be beneficial in improving G-tube-fed patients’ health and well-being.
"Our study’s dietitians developed a BLEND-diet prescription for patients and families to follow based on Canada’s Food Guide,” says Kelsey Gallagher, Research Coordinator and lead BLEND study Dietitian at SickKids. "This enables dietitians to tailor BTF to ensure G-tube-fed patients are meeting their nutritional requirements, while also allowing caregivers to have more autonomy in what food choices they make for their child.”
Parents were able to follow the personalized plan provided by the BLEND team, preparing the puréed food at home. This enabled their G-tube-fed children to enjoy family meals by consuming the same foods as the rest of the family – in most cases for the first time.
"Parents asked for BLEND,” says Gallagher. "They didn’t mind the extra time and labour involved in preparing the food, and they said they felt like they were doing something for their child. We were surprised to see how satisfied parents were with BTF despite the additional time it takes to prepare feeds vs. just being able to open a can of formula. And financially, most commercial formulas are covered by OHIP+, so families that chose BTF now had to pay for food out of pocket. Our study clearly showed that parents still preferred BTF to commercial formula despite these perceived burdens.”
For BLEND study participant Alexa, 6, BTF offered many benefits. Alexa has intermediate severe Salla disease, which is neurodegenerative. She is non-verbal, can’t walk and needs constant supervision. She has not tasted food since she was an infant: the risk of choking, and aspirating into her lungs where she could develop pneumonia, is too great. Because of this, she is fed through a G-tube. However, when formula had previously been pushed through it, she would suffer reflux, and it would at times aspirate into her lungs.
"It took about two months for Alexa to transition to BLEND,” says her mom Nicole Kyryluk. "She is now a lot more stable. She has gained weight and has less reflux which allowed us to reduce her reflux medication. She also has fewer aspiration episodes, fewer colds, and fewer hospital stays.”
Besides the nutritional benefit of BLEND, there have been social benefits as well. With BTF, "We are all having food together,” says Nicole. "She is sitting at the dinner table, being part of the family and sharing the whole experience with us. It takes away the clinical part of eating and makes it as natural and normal as possible for her.”
Penny, 3, was born with a heart condition, and required two surgeries as an infant. During this time, she had a gastric tube inserted in order to allow her to continue to grow. With the formula, she had a lot of feeding intolerance, with projectile vomiting and reflux. Even with her G-tube placed when she was about nine months old, she would vomit six out of eight feeds of breastmilk supplemented with formula each day.
"The volume of the vomiting made it hard to leave the house,” says her mom Amanda Carter. "I was doing copious amounts of laundry. When we came into SickKids for appointments, I would pack five changes of clothes.”
Amanda was excited to try Penny on BTF and join the BLEND study. "I noticed the difference in her within the first month,” she says. "When she was just on breastmilk and formula, she would gulp and gulp and gulp to push the reflux down. By the end of the third month on BLEND, gulping was very rare, maybe twice a week, and by six months it was non-existent.”
The move away from the commercial formula feeds had other far-reaching benefits for Penny. "With BLEND she came alive,” says Amanda. "I didn’t have to prop her up on the couch when feeding and keep her there for 45 minutes afterwards. Penny could participate in occupational therapy, do tummy time, and bear weight on her feet. It was life-changing for her.”
It was life-changing for her family as well: "BLEND gave us a lot of freedom that we did not have before,” says Amanda. "You take it out of the freezer, thaw, put it in a syringe and there you go. There is no more diarrhea or constipation. And we didn’t have to feed around the clock any more. For the first time since she was born, I could get more than five consecutive hours of sleep!”
Almost a year after starting with BTF, Amanda noticed Penny had more interest in what the family was doing at the table, and she started taking baby spoonfuls of BTF from a bowl. Without the gagging and reflux, Penny could tolerate a spoon in her mouth. Over the next year, she transitioned to not using BTF at all, and is now eating regular food by mouth. She has gained 15 pounds on BLEND.
"The stress level alone in the house has dropped significantly,” says Amanda. "Our mood was based on how Penny was eating. It’s nice to see her eating normally now.”
The study provides information for clinicians and families that are wondering whether BTF is something worth considering. When clinically indicated, BTF gives families another option. Parents were extremely satisfied with BTF, with 94 per cent saying that these feeds were successful for their child and 100 per cent saying that they would recommend this diet to others parents of G-tube-fed kids.
Both moms feel strongly about advocating for patients who could benefit from BTF. Says Nicole: "I’m a strong advocate for BLEND. It’s been perfect for my daughter and I want to support the program and educate other families on the benefits.”
Amanda adds: "I hope more people are aware of blenderized tube feeding. When we’re out in public, people wonder what you are doing with the syringe. My husband thought it was the coolest thing ever – he’d educate anyone who’d ask!”
Marcon suggests that any parent who would like more information on BTF should speak with their child’s health care provider or dietitian. As for further research, Marcon plans on studying specific outpatient populations in greater detail to better understand which patient populations most benefit from BTF. She will also examine using BTF as a specific intervention in some patients who are dealing with GI symptoms or gut inflammation.
The BLEND study was funded by the John Garfield Campbell Fund and SickKids Foundation. It is an example of how SickKids is contributing to making Ontario Healthier, Wealthier and Smarter. www.healthierwealthiersmarter.ca.