STEP
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Serial Transverse Enteroplasty (STEP)
An irreversible bowel lengthening surgery that can in some cases double the length of the bowel. There is some controversy surrounding this procedure; as with any surgery, some patients have great results and some do not (details below). See also other surgical treatments for short gut.
Information from proponents of STEP is available on the International STEP Data Registry through Children's Hospital in Boston, where the surgery was developed. They have very good pictures that explain the procedure very well. They even have a web cast where you can watch them do the surgery on a patient.
As of December 2007, STEP has been done ~15 times in Boston and over 40 times in Omaha.
A Choice against STEP.
Here is a summary our decision-making process that led us to avoid STEP for our daughter
When we first came to Boston we were pressed very, very hard by Ellie's first surgeon in Boston to have her short bowel lengthened through a new procedure called a STEP or Serial Transverse Enteroplasty. It is a surgery that was developed at Boston Children's by Ellie's previous surgeon and GI doctor, who were very adamant in their belief that Ellie should go through STEP.
After getting second and third opinions from other Children's surgeons we we encouraged to avoid this surgery even if lengthening was necessary or to see it as the last option before transplant since it is irreversible. It seems that there are issues related to the surgery that don't come out in the description of the surgery or its efficacy to make a short bowel behave like a long one.
What really hit home is how many people came out of the woodwork to urge us to look into different options other than STEP. These were people whose opinions we valued very highly and were also the ones who saw the lion's share of post-STEP kids and their follow up care. All was not rosy and that made us concerned since these are the folks who have to deal with these kids when they are done with surgery and when they keep coming back due to complications.
Another issue that we had was we had a hard time finding a family that had had a full STEP that was happy with the results or were willing to talk about their experience with us. Not one mom or dad of a kid who had this new surgery was offered up as an advocate for the procedure which struck us as odd. If it was as good as they said it was, say as good as our results so far with Omegaven, we would be telling everyone that we know about the wonders of this new solution.
But not one was offered up. Odd.
In the time since we came to Children's we have come to know two STEP kids. Both are still on TPN years after the surgery and one has very little bowel function. We have also heard from other families that chronic bacterial overgrowth and lack of motility is very common post-STEP. Bacteria and central lines don't get along so well in the same baby.
I would encourage any short bowel parents that are considering this to ask the opinions of STEP from the people that have seen it close up in the day-to-day follow up of the surgeries-the surgeons at Boston Children's outside of the Short Bowel Program. Some surgeons around the country have picked this up, are new to the STEP game, and haven't seen the dark side of this approach. The Boston docs have seen a lot of STEP kids.
Go to the source and give them a call. You only get one shot at this and we were encouraged to keep this as the next to final resort, not the first option.
In favor of STEP
Some families on the yahoo Short Bowel Syndrome group have expressed more positive feelings about STEP, and people have raved about Dr. Sudan, the surgeon performing STEPs in Omaha. But one can get the impression that the positive assessments are more qualified, or nuanced, than the universally positive assessments of Omegaven, for example. Some of the positive assessments were provided a few weeks after the procedure, but some people argue that it can take much longer to fully assess how effective (or problematic) the procedures were. Another parent indicated not being able to know for sure whether the STEP led to the subsequent progress her son made, but not regretting it.
Personal stories
please add your experiences with the procedure
