The difficult decision to feed a child through a g-tube
Dr. Katherine Nelson and SickKids parents Genevieve and Gavin reflect making the decision to use a g-tube.
Dr. Katherine Nelson, Staff Paediatrician, Paediatric Advanced Care Team (PACT), Academic General Paediatrics Fellow.
As a paediatrician, I often care for kids with neurologic impairment, which is caused by problems with brain development or injury. Many kids with neurologic impairment have trouble swallowing, which can cause them to choke or not to gain weight. When such problems happen, we talk to the family about feeding the child through a tube implanted through the abdomen directly into the stomach instead of by mouth. The surgery to place the tube, which we call a g-tube, is pretty easy, but the decision to have the surgery is definitely not.
When talking to families about the decision, I can describe the physical outcomes that we expect: the good ones like weight gain, and the not-so-good ones like tube leakage. But because I’m not the parent living with it every day, there are a lot of questions I can’t answer. I don’t know how it feels to go from feeding a child with a bottle to feeding him or her through a g-tube. I don’t know what it means for siblings, or how it changes planning a family vacation. To give the best information possible for a parent considering g-tube feeding, I need to know about family perspectives, not just medical ones.
Some colleagues and I decided to do a study. We gathered all of the medical literature we could find that included families talking about life at home for children with neurologic impairment and g-tubes. Families described both good and bad outcomes affecting the child, the parent, and the whole family. Sometimes parents felt differently about the same outcome—some families thought the g-tube made caregiving easier, others found it more difficult. There was definitely not a universal experience. Many factors influenced what life was like for an individual family after the g-tube was inserted.
When talking to families considering g-tubes, it’s easy for health care providers to focus on the concrete physical outcomes, ignoring the other issues that may be critical to a family’s decision-making. We hope that clinicians can use our study to have better conversations with families. Conversations during decision-making about the benefits and challenges families may face after the tube. And conversations after the tube about how their experiences compare to what they expected. We know that g-tubes are hard for families—it’s important that we do what we can to support families before and after the g-tube is inserted.
The full paper, “Family Experiences With Feeding Tubes in Neurologic Impairment: A Systematic Review” is available in Pediatrics.
Genevieve and Gavin, proud parents of Zoe and Ailsa
Our journey with the g-tube did not follow a typical path for children with our daughter’s syndrome. Despite a healthy full- term pregnancy, Zoe was born quite small. The doctors used terms like “dysmorphic” but to us, brand new parents with their first baby, Zoe was perfect… just a little different.
When Zoe, now eight, was only two weeks old, we were given her diagnosis; chromosome 1p36 deletion syndrome. We learned how this would affect Zoe’s development and health. Almost all children with Zoe’s syndrome had g-tubes from early infancy and her doctors recommended we follow the same course.
At first sad and devastated and then later, angry we said no. We knew feeding Zoe orally would be difficult but how could we not give her the chance to taste and enjoy a ‘normal’ activity like eating? We wanted to give her the opportunity to show us what she could or could not do.
The first few years were extremely difficult. While Zoe learned to eat and love food, she had a very difficult time with liquids. At first it was only mush, then soft foods and now she can eat anything if it is cut up into small pieces. Zoe’s favourite foods are pizza, pastas, cheese, chips, crackers and anything with sour cream! She loves to eat!
Zoe has always been petite (she gets mad if we call her small!) but a while ago, she hit a plateau with her weight and muscle development. While Zoe continues to enjoy eating, she doesn’t want to sit for 45 minutes to eat a meal. She wants to spend less time eating and more time playing, especially at school. Meals turned into battles at our house with us trying to force-feed her high calorie mush.
We felt like failures as parents- why couldn’t we feed our child like “normal” people? While we knew that g-tube surgery was a minor procedure, Zoe was our baby and we hated the thought of cutting a hole in her perfect belly. And then we realized, it wasn’t about us, it’s about Zoe’s quality of life. Our original goal for Zoe to enjoy food orally was no longer being met.
Zoe participated in the decision to have a g-tube inserted. Although she is non-verbal, she has clear ideas of what she wants and uses her iPad and sign language to communicate. Zoe was very clear about what she wanted – she wanted to eat the foods that she enjoys and have time to play. She did not want to sit for 45 minutes with a one-on-one at school while her friends play. She did not want to spend her time or energy eating the high calorie, easy to eat mush her body needed to thrive.
The g-tube has benefitted our whole family in ways we did not anticipate. Having the tube takes the pressure off meal times. Now we can all eat as a family and when Zoe is done, we top her up with the extra calories she needs. Running late for an appointment? No problem, drop a feed. On a long road trip? Every stop for a meal or snack no longer takes two and a half hours, and when Zoe is sick, we have an easier way to hydrate her.
Has it all been smooth sailing? No, definitely not. Zoe has had multiple infections, pain and leaking. We’ve had to do treatments at home to burn off extra tissue growing around the tube. These treatments are painful and it is heartbreaking to have to put your child through this. There are also the annoying aspects of having a child who is tube fed like cleaning the bags and tubing, tubes popping open or out of place and having to carry around the extra equipment, etc.
But at the end of the day, we know we made the right choice for our child. At dinner, Zoe enjoys pepperoni pizza and a few sips of milk. We hook her up to the tube feeding and then snuggle on the couch as a family to read. Having the g-tube has given quality time back to all of our lives.