It's funny what one gets criticized for. Recently a couple of young patients have let me know that some other eating disorder providers in our community have tried to steer them away from Kartini Clinic because “Kartini Clinic just shoves a tube in everyone”. You can imagine this was rather startling to hear. And -- goes without saying, I hope! -- quite untrue.
The history of nasogastric (NG) tube use at Kartini Clinic is this: on our pediatric inpatient unit we have always been able to use nasogastric tubes when feeding orally was not possible, just like any other doctor in the hospital. Dr. Moshtael and I are both Board certified pediatricians and the nurses at our partner hospital, Randall Children's Hospital, are nothing short of amazing, both with the kids themselves and with all the paraphernalia of the hospital: IVs, telemetry heart boxes, wheelchairs and, yes, NG tubes.
As far as I know it’s quite rare in Portland (and elsewhere) for a PHP programs to have dedicated pediatricians and pediatric nurses always on site to render medical care when needed. We have always had them, and they are one of the things that distinguishes our treatment center from others. In 2000 we developed our Day Treatment Unit (DTU), which was a valuable step-down program for kids who had to be hospitalized, but we could only accept kids into the DTU who were able to eat. In 2015 we greatly expanded our footprint and built out a specially designed facility for our entire clinic, including the DTU, now called Partial Hospitalization Program (PHP).
Sherrill Gandsey, RN, a dedicated, experienced pediatric eating disorder nurse joined us in 2015 and helped make it possible for us to keep kids out of the hospital who formerly would have stayed there for some time before transfer to PHP. That’s right, our use of NG tubes keeps kids out of the hospital! This now includes kids with borderline medical instability, children with ARFID and failure to thrive as well as those who needed a NG tube. For us, this is a great clinical improvement: now we can keep children who need a feeding tube in PHP, sleeping in their own bed at night, and staying connected with family and friends and receiving all the mental health interventions so problematic to render in the hospital. Our mental health staff has created a child-friendly, warm and creative milieu for the PHP. Gone were the days when children with NG tubes were ostracized as “too sick” to join others in play. And surrounded by their peers in an atmosphere of support, it’s easier for our kids to learn to eat again and to get rid of “the tube” more quickly.
So when do we use NG tubes at Kartini Clinic and why? Basically, regardless of underlying diagnosis, we use a NG tube to save the life of a child. That is why we are not afraid to do it. In the past, I have met many patients who left treatment centers weighing less than when they went in. They had been allowed to refuse food because “what can you do?” The common policy was that unless a child “bought in to their treatment” there was no point in “forcing” them to eat. Frankly, I think that the expense of hiring medical personnel may have been the actual reason for this, and the psychological explanation just a smokescreen.
The fact is, refeeding a child heals them whether or not they want to be healed. It simply must be done. Understanding this is why Maudsley and all forms of home refeeding have made such a contribution to the field.
When thinking about the use of NG tubes, let’s divide the patients into two groups: those with frank anorexia nervosa and those who have other eating disorder diagnoses. The treatment is the same (prompt, adequate weight restoration), but the rationale is a little different.
We get children from all over the country and world, and many do not have anorexia nervosa. Some have Avoidant/restrictive Food Intake Disorder (ARFID), some have Food Phobia, some have cancer cachexia, some have psychosocial failure to thrive or failure to thrive associated with other medical conditions. For example, we had a delightful boy whose life had been devastated first by his cancer and then by his chemotherapy: he was unable to experience hunger or appetite, his growth was stunted, his social development was stunted and he had no energy. His doctors had tried everything. Well, almost everything. We admitted him to PHP and placed a feeding tube to remove the pressure for him to eat. This allowed his parents (and us) to stop worrying about his caloric intake while we got to know him. In PHP he was included in the creative day of kids his own age. Slowly he regained his weight (over thirty pounds). His appetite returned, his energy returned and he grew several inches. The psychological recovery of this intelligent boy would bring tears to your eyes. He was eventually able to begin to eat solid food again and to find his favorites. And he is just one example of a child whose life was saved and profoundly altered, physically and psychologically by the use of a NG tube. You cannot be afraid to make life-giving interventions when they are needed.
Children and youth with anorexia nervosa are a little different in that they have a brain disorder that “commands” them not to eat. They come to us in various stages of illness, but all are told the same thing, matter-of-factly, not punitively: “if you cannot eat or merely refuse to, you are not in trouble, no one is mad at you, but we will need to place a tiny tube into your nose and stomach and feed you that way until you can. It is your choice.” The vast majority of kids will choose to eat -- wouldn’t you? But a few are so overwhelmed by their brain disorder, their thought disorder, that they cannot eat, no matter what. These kids have a NG tube placed to give them a break from the torment of worrying about food with every ounce of their strength. Eventually, they too return to eating. An occasional child will test us by eating at first and then refusing, to see if we mean what we say. Well, we always mean what we say or there’d be no point in saying it! If they are unable to eat sufficiently, they will have a tube placed until they can face eating again. This intervention will shorten treatment time for many children.
The majority of our NG tubes are placed right here in our facility and do not need hospital or emergency room placement. We sedate the child ahead of time. We use very, very small pediatric tubes. Our nurse is gentle and fast. Our therapists are there to be encouraging and our therapy dogs often come too.
Parents who have watched their child dwindle before their eyes, who have been afraid to go to sleep at night for fear their thin, weak child would stop breathing, know what we mean when we say we will do what it takes to save the life of a child. Anything short of that would be regrettable.