Feeding Tube Awareness Week: Grateful for our Hardest Decision

For Feeding Tube Awareness Week this year I wanted to share something I wrote last year. I wrote it for a fellow FPIES mom friends website, Awareness Critters, to raise awareness to both rare diagnosis and tube feeding. 

I want to share how much having a feeding tube has positively impacted our son’s life.

The decision for our son to have a feeding tube has been one of the hardest decisions we had to make for any one of our children.  I want you to know, our choice to proceed was the best choice we made for the health of our fourth son who was born with a rare condition called Food Protein Induced Enterocolitis Syndrome (pronounced “F-PIES” for short).

Having FPIES doesn't mean he has to have a feeding tube, but he does.  Having FPIES does mean that he has a delayed food allergy condition. There are no tests for this type of food allergy and the only cure is to avoid foods that trigger this delayed allergic response.  Some babies/children are allergic to 1 or 2 foods, while others (like our son) can be allergic to multiple foods which can further limit the diversity of the diet. Making things more complex for him, foods like soy and corn; which our son is allergic to, are in/on so many foods (sprays and waxes on fruit, can linings, plastic materials, animal feed, preservative and additives, etc) which makes his variety of safe foods became even further limited.

FPIES is a rare and often misunderstood diagnosis and, seven years ago, when our son was first diagnosed, much less was known as we searched for best options to fit his needs – to provide the him nutrition to thrive and grow, nutrition that he wasn’t allergic to.  It was a constant balancing act that we were struggled with everyday.

Before he turned 3yrs, a feeding tube was discussed by his medical team for months as a means to help him thrive, and despite not currently having a safe formula to put in the tube, it was hoped that it could provide him with some consistency to escape his cycles he was trapped in due to his allergies and limited diet. The cycle of: not enough nutrition, trialing a food in hopes of finding nutrition, inflammation causing colitis, pain from the reaction; and malabsoprtion leading to anemia, low blood sugar and acidosis, vitamin deficiencies, and weight loss.  Keeping him further trapped in the cycle was not enough nutrition to make up for the malabsorption resulting in weight loss and further anemia, vitamin deficiency, and other unknown internal disruptions to his body.  And repeat with each food trial, each failed food, each accidental exposure or ingestion.  

A feeding tube should have been an easy decision. But, would it really help him?  We knew if it would not help his allergic condition (FPIES) but they assured us they were confident it would help him, somehow.   The final decision was left to us. 

No one would tell us this was the right decision.  We knew the odds were that it would help him; but having a tube doesn’t make allergies go away or less allergic to your allergens; so how could it help him? We were going through so many emotions….

We decided to proceed forward, a large part of the decision now was because he was currently on TPN (Total Parental Nutrition) via an IV line in his chest.   Trapped in that viscious cycle was a little boy who still had to enjoy eating and he was losing that battle, he had begun to refuse foods that provided nutrients he vitally needed; combined with villi damage from food trials left him needing TPN.  But, after 8 mo. on TPN and before committing him to a port for continued and long-term TPN, his medical team wanted to trial one more formula and we would do this through an NG Tube which would be his first tests of how his body would handle enteral nutrition.  We always remain hopeful that his body will accept the nutrition it needs but after a few weeks on this formula it became clear that even though he was not having a typical acute FPIES reaction to the formula; his body was not accepting it (initially by his outward demeanor, pallor, and sensory flares and then later confirmed by inflammatory markers in his blood and stool).  We still don't full undestand this reaction to the formula but by this time, we had already committed to the G-tube and moved away from TPN. What would we do now?  Had we made the wrong decision?

It was a difficult time, our little boy was hurting and he needed nutrition.  We decided to begin moving forward with a blended diet of his safe foods to start, with the hopes that his nourished body would begin to heal itself and, with nourishment we could slow down his food trials to the pace his body needed for recovery between trials and we could, hopefully, slowly, add more foods as we expected to do when he was first diagnosed.  He fell into a viscous cycle and now his tube could break him out of this!  We had hope! 

It has been a slow process but we have been able to add a few new foods -- to his diet and his blenderized feeds - every year since then, filling in his nutrition.  And, along the way, he thrived. 

Having a G-tube with safe nutrition allowed us to finally not have to worry as much about his daily caloric intakes, how we would coax him to eat enough, doing ‘dream feeds’, staying home to prepare his foods safely and fresh.  And it allowed us so much more.  For the first time in years, we were able to keep his blood sugars stable, he started to sleep through the night – not waking up hungry, and he gained weight and, in time, it helped with his severe anemia.  We relaxed around meal times, allowing him to eat his safe foods for pleasure.  We relaxed our schedule at home, not having to plan the day around when, where and how he would consume his few safe foods. This allowed us to do more things outside of the home and expose him to more of life and less of hospitals.  He has truly thrived.  We are truly grateful for this hardest decision.