A Transplant’s Not the Only Alternative for Children With Intestinal Failure; Rehab is an Option for Most Patients
Our intestinal transplant program has a worldwide reputation. We’ve performed more intestinal transplants here at The Nebraska Medical Center than any other single hospital in the world. We helped pioneer the procedure.
But whenever possible we prefer not to do it.
Rehab for our pediatric intestinal failure patients is so successful, we don’t need to transplant very often. Rehab has become our default – with transplant as a wonderful backup plan, but no longer the only option.
Our patients come from all over the country and around the world. Many times, parents have been told that an intestinal transplant is the only treatment for their child. But when they arrive, we start with what they have – whatever the child’s condition and function – and go from there. It’s better to build on whatever they have than to start over. The family goes from having no hope to realizing that, very likely, their child will be able to live and eat normally.
When a child comes to our program, the family needs to be here four to six weeks. That sounds like a long time at first. But once they arrive, the families are so relieved and comfortable, often they don’t want to leave. Regardless of when they return home, they are part of the program for life.
Here’s what usually happens. The first week is evaluation with testing every day, and we make a plan. Next is an inpatient stay for a surgical intervention. Then it’s outpatient care for the next few weeks, attending weekly clinics and communicating almost daily with our team as we work on improving function in the intestinal tract, finding a pathway that will work for them and carefully moving toward our goal of eating and drinking by mouth.
When I tell parents that we hope their baby will one day go to kindergarten, carry a lunchbox to school and eat just like other kids, it blows their minds. But that is the goal, and we see our patients reach it all the time. It takes time and a dedicated team of experts guiding the way, but we get there working together. The family has been told to expect the worst; we let them know to expect the best.
There are times when we meet a child and we decide that the risks of taking time to work on intestinal rehabilitation are too high – that perhaps there has been too much damage done prior to their arrival. There are other times when, despite everything we do, we cannot make progress and the risks of being on TPN begin to mount. These are the times when we turn to transplant, and in these cases it is truly lifesaving.
Rehabilitation and transplantation aren’t competitors with each other, but rather they work together so the right thing can be done for a child at the right time. When we can, we always prefer rehab, because successful intestinal rehabilitation doesn’t just delay the need for a transplant – it eliminates it. When that goal can’t be achieved, transplant moves in to provide lifesaving therapy.
With these two complementary tools, the child with intestinal failure has a great chance to live a full, productive life.