by Ayala Ballonoff Aidman
As a parent, I have experienced being able to easily wean my child from an NG-tube, only to later have my child become tube dependent for an extended time. An NG-tube is a thin flexible tube that extends through the nose into the stomach to provide a minimally invasive way to feed a child who cannot eat or cannot eat enough by mouth.
My little girl came out of the NICU at one month old with an NG-tube, gravity feeds, and just barely able to take 10 ml of a bottle or nursing. As soon as we came home, she was much more comfortable nursing, since we did not need to follow the hospital protocol of stripping her, weighing her, nursing her, then weighing her. I saw that she was waking to feed before the NG feed, and then was too full for the NG feed. So after a month we discontinued using the NG. Her pediatrician was not surprised, though the doctor had provided little support on how and when to wean off of tube feeds. It was my own experience as a nursing mother that led my decision.
Our next experience with an NG-tube was after a lengthy hospitalization that included almost seven weeks of intubation. For those who have not spent extensive time in the PICU, that means she needed a ventilator to help her breathe. By necessity, my daughter was highly sedated and fed through an NG-tube in the hospital once she resumed taking feedings.
Except for having a review of my NG placement skills and learning how to use a feeding pump, there was no discussion in the hospital of how long she might need supplemental feeding, how to reintroduce eating skills, or how the medical trauma she experienced from having medical devices in her mouth would affect her reaction to nursing or eating. There was not even any discussion about her stamina or the reality that a full recovery would be a process, once we got home.
A Feeding Clinic with No Support
To be honest, after seven stressful weeks in the PICU, I was just glad my child could breathe without a machine, and I was not thinking much about how she would eat. She was cleared with a swallow study to nurse again, and that was a relief for both my baby and me. She did not have the stamina she used to have to nurse, and though she was beginning to eat soft foods before she was hospitalized, it did not occur to me to try foods, since she was so weak.
Our hospital recommended we make an appointment with the feeding clinic. First off, I was very surprised to find there was a four-month wait for appointments. This was my first interaction with a feeding clinic and I did not know what to expect. I tried to work with that feeding clinic for about nine months. I took my child to three appointments before I left that clinic. Between appointments, I tried to call the clinic for support, since I felt unclear about what we were supposed to be doing, and was not seeing much progress. The responses from the clinic support line were minimal and not helpful. I was told, “Your child is doing so much more than many of the kids we see. She is doing fine.” I did not think our progress was fine, and a global average of other children’s progress was not an accurate measure of my child’s potential. I was starting to think I could expect better than this.
I think there are a lot of times in life, and especially in parenting, when you only have one experience and you don’t know if it is good or bad. You only know what the people controlling the experience tell you. So if it isn’t working, you may be told in subtle or explicit ways that it’s you—not them—that is not working. You may be told that you are being non-compliant, overly anxious, inexperienced, or even that what you are doing is just fine and you should not worry.
I started to search around, both in speaking to other parents locally, looking up tube feeding and tube weaning on the internet, and talking to my child’s doctor. When your child who is medically complicated is getting her medical care from an array of specialists at one of the best children’s hospitals in the country—if not the world—it may take you some time to think of looking somewhere else for answers. Somehow, I did get to that place.
Finding Another Clinic
What a surprise for me when I found a program in a smaller, less well known hospital, a good long drive away from the big city. My first surprise was that the wait time for an appointment was only three weeks. Well, that is actually an appropriate wait time for a child with a problem with a major life activity! Waiting four months to work on feeding skills for a young child is a good way to miss out on important cognitive and motor development that grows in tandem with feeding skills.
My next big surprise was at the appointment. Instead of just watching me and making clinical comments, the feeding therapist engaged with my child and me. With my own professional background in special education, I recognized that she was modeling a technique for feeding. When we finished feeding, the therapist confirmed that she was showing me a technique, and discussed why this technique would help my child, and gave me explicit information on how to carry it out.
When we discussed how to feed and how often to feed at home, I described the recommendations of the previous clinic, and how what they asked me to do was beyond my resources in time and support at home. The therapist at the new clinic described a program of more frequent but much shorter feeding sessions, and suggested ways to minimize the complications of feeding, such as offering only two food items at a session, using a timer, and building up the length of the session from five minutes, which my child currently had the stamina for, up to 10 minutes, and not more.
A follow up appointment was set for one month. I went home. Due to the poor response of the previous clinic to being called for support, I avoided calling the clinic for most of the month. Towards the end of the month, I decided to call, since we would be seeing them soon, and the therapist had said she hoped I would call to update them during the month. I was pleasantly surprised by the quality of her response when I called. I reminded myself that this was a whole new game with new players.
Even so, my negative experiences with the previous clinic sometimes overshadow my interactions with the new clinic. I get anxious before appointments because I expect to be scolded or told that I am not doing enough, or even threatened with social services if I don’t comply.
Over time I am learning to trust the new clinic. Since they are not local to my area, it took some time before I found someone in my network of friends who had worked with my new clinic. When I did, my friend had such warm and positive memories of her family’s success with the clinic that it has buoyed my confidence in this long process of slow, skill based tube weaning and learning to eat.
Finding the Right Clinic
Below is a list of indicators I would like to expect from feeding clinics. Every tube feeding family has different experiences and it would be great if others can add their own expectations. Some of these are more like wishes. I think we can expect and wish for better.
What can parent expect from a feeding clinic?
- Set up an initial appointment in a reasonable time frame for the child’s developmental age.
- Explain the philosophy of the feeding clinic. What is the profile of children that they have success with teaching to eat? What is the profile of children that are appropriate to their more intensive therapeutic programs? Let parents observe the feeding program either in person, or with video clips, including clips of children with difficulties.
- Demonstrate techniques that build on parents’ and caregivers’ existing skills
- Explicitly teach techniques.
- Explain both technique and feeding theory to the extent and depth the parent or caregiver is interested in.
- Follow a parent or caregiver’s advice on interaction with the child. This avoids doing anything invasive or traumatic that will trigger aversive responses or create setbacks in feeding progress.
- Hear parents and caregivers when they describe the resources and limitations of their home.
- Follow up at sufficiently frequent intervals for therapists to see improvement, or to support if there are new problems.
- Be accessible by a variety of communication media. When parents or caregivers ask for feedback, give meaningful support specific to the child in treatment.
- Do not be bound by an orthodox approach to the therapy. Support parents and caregivers in responding organically to their child as feeding skills develop.
- Be knowledgeable about resources for parents. Develop a group of parent mentors or a local parent support group to work with interested parents.
- Be prepared to map out short term and long-range expectations of what feeding and weaning will look like. Describe obstacles or decisions that may need to be made, and when or how the team will recognize those.