Written by Molly Polacco, MS, CCC-SLP, CNT, NTMTC, CLC
As a seasoned clinician with about a decade of pediatric acute care experience, I saw my fair share of feeding tubes. They didn’t scare me. I often recommended them after swallow studies, praised their use in the NICU to ensure infant-driven feeding practices were utilized while these infants were learning to eat, and facilitated tube weaning processes. I thought I was well equipped and understood feeding tubes, until my daughter came home on one.
My daughter is 3, soon to be 4, and truly fits the bill for what people say a second child is – independent, resilient, full of life. She’s my little pistol. At home, we managed her constipation for years, ever since a hospitalization at 9 months for a bowel clean out. Over these 3 years, I watched her growth slowly start to falter. The height difference between her and her sister grew larger, growth curves dropped, weight loss started.
As a feeding therapist, I attributed lack of hunger cues and rapid fullness to be secondary to chronic constipation. We taught our daughters early to “listen to their tummies,” but once the growth started to falter, I wondered if my daughter was truly capable of understanding this concept (spoiler alert: she was).
After a very hot couple days and not enough hydration, we landed in the ER. At this point, I demanded a GI consult (after being on the waitlist for an appointment months out) and told the doctors, “I’m not afraid of a feeding tube if we need one at this point.” My daughter was admitted for further work-up to combat the dehydration and determine the cause of the faltering growth and weight loss.
During her hospitalization, we discovered a surprising diagnosis of severe gastroparesis. At 4 hours when the stomach should essentially be empty, 82% of liquids were still retained. Her pediatrician said, “this is the worst case I’ve ever seen.” Her medical team was shocked because my daughter never vomited once – which I attribute to her listening to her body and truly understanding hunger satiation/fullness cues.
After a week in the hospital, we ultimately came home on a continuous ND tube. This is where the lessons really started.
Lesson 1: You don’t really sleep with continuous overnight feeds
It felt like the newborn stage all over again. To help with hunger cues during the day, my daughter receives continuous overnight feeds over 12 hours. Her stomach cannot tolerate gastric feeds, so bolus feeds aren’t an option. With formula being a food product, it can’t sit in her enteral feeding pump bag for more than 4 hours. This means that my husband or I am up every 4 hours to replace the formula, and that’s only IF the tube doesn’t get kinked or alarm.
As a clinician, I grossly underestimated this. I naïvely assumed that you could put the entire feed in the bag at once, set the pump, and call it a night where everyone could sleep. That’s simply not reality.
Lesson 2: Rehashing your experience is traumatic
We are taught as clinicians that it is so pertinent to receive a thorough case history from our families as part of the evaluation process. I personally would often walk into a room and say to my families, “tell me what’s going on.”
Once we came home with a tube, well-meaning family and friends constantly asked, “What happened? How long will she need the tube? What are they doing for treatment? Did they do more testing?”
I never expected the emotional and mental toll this would take on me. As a clinician with an in-depth understanding of tube feedings and the etiology of my daughter’s feeding intolerance, I thought I’d be more equipped to answer these questions repeatedly. However, repeating it frequently results in emotional turmoil and heightened emotions.
As a clinician, I grossly underestimated how repeating the same experience (even to medical providers) could cause re-traumatization.
Lesson 3: Tube care is exhausting
Working in pediatric acute care, I was never responsible for tube management. We had amazing RNs who would ensure that tubes were taped properly, clean, and that the child was bathed.
In preparing for discharge, I realized just how little I knew about tube care. How would we bathe her? When do we HAVE to change the tape? For a busy child, how do we keep the tube out of her way? For the summer, what activities do we now have to modify or avoid to protect the tube?
As a clinician, I grossly underestimated how little I knew about tube care and how truly restrictive and limiting it is for some children. This summer alone, we have to avoid the beach and the pool – some of my daughter’s favorite activities – to ensure that her tube stays clean and in place.
Lesson 4: Don’t forget about the siblings
My oldest is such a sweet, highly empathetic individual who adores her younger sister. Watching their bond together is one of my greatest joys as a mother.
While in the hospital, my daughters were together for as long as visitor hours allowed. My husband and I would rotate who slept at home and who slept in the hospital to ensure that both girls were getting as close to equal time as possible. One night when I was home, my oldest started acting out more and began to show some behavioral concerns. Upon further investigation, I realized that I never accounted for how hard the hospitalization was going to be on her.
At 5, my daughter is old enough to recognize inequity (she would say that it wasn’t fair that my youngest got to have sleepovers and watch TV all day), but isn’t quite old enough to grasp the gravity of the situation.
Upon return home from the hospital, my youngest was showered with gifts. Everyone considered my youngest, but very few considered by oldest and how traumatic the experience was for her too.
As a clinician, I grossly underestimated how much the siblings see/understand. Even if they aren’t present at the hospital, they absolutely recognize the shift.
Lesson 5: Children are naturally curious
The week that we came home from the hospital, my daughter had her first ever dance recital. After being cooped up for a week, she was excited to perform and win her trophy. While she was waiting for her turn to go on the stage, a well-meaning, curious child approached my daughter and said, “woah what happened to you?”
I did expect that this moment would come, but no amount of preparation could have truly prepared me for this moment. My daughter froze, confused, whereas I took a beat to kindly respond, “her tummy isn’t quite working right now, but her tubie is very kind and helps her to grow while we figure it out. We’re very thankful for our tubie.”
I won’t lie, I went home and cried about it that night. Children are naturally curious. That child did nothing wrong by asking, and I am all about education and inclusivity. However, I cried thinking about how my 3 year old might be cornered in preschool without me present and how she would respond. At 3, she shouldn’t HAVE to understand what’s happening. And at any age, no one ever needs to disclose their medical status.
As a clinician, I grossly underestimated what it’s like in the community for disabled children. I preach inclusivity and love seeing inclusion in the community, but I never experienced what it’s like to have a child with special needs in the community first-hand until now.
Lesson 6: The true fear of the unknown
I’d be a rich woman if I had a penny for the number of times I had families ask me how long their child would need to have a feeding tube. I would give a similar answer each time: “Feeding therapy progress is often slow and unfortunately we truly don’t have a timeline for how long it will take to see the improvements to come off the tube.”
Although that statement still stands, as a parent now on the other side of it, I understand the desperation and the need for a light at the end of the tunnel. With the frequent night wakings, the tape changes, restrictions, fighting with DME companies for supplies, insurance copays, and everything else included, we need a deadline. In the dark times, it gives hope. I have sat online researching and spiraling into every possible scenario for when this ND tube could end.
As a clinician, I grossly underestimated how this unknown ending would impact my sanity. When we have a deadline, we can push through most anything, but without it, it feels like the goal post is constantly moving, never achievable.
Lesson 7: How truly resilient children are
I always knew children were resilient and some of the strongest fighters. I saw it every day at work. However, it doesn’t truly hit home until you see your child navigate things that some children (and adults) may never face in their lifetime.
In the span of 6 days, I watched my daughter have 4 different feeding tubes placed (all while screaming and crying), followed by her running around the hospital playroom completely disregarding the tube in her nose.
As a clinician, I grossly underestimated just how strong and resilient children are. They may face immense trauma but continue fighting anyway.
Conclusion:
At the time of writing this post, we’ve been home with the tube for a week. We are learning as we go, and I’m sure more lessons will arise with time. As a feeding therapist, this experience has taught me more clinically in a short period of time than years of work ever will. As a mom, I wish it was a side of the field I never fully understood.