Surgery #25 Mitrofanoff Stoma Revision "Always Be Brave"

Mitrofanoff Stoma Revision #25 July 1, 2019 

To summarize this post, I start with blogging about the "practicing of medicine" that led to several discouraging failures.  I conclude with many examples of Trigg family gratitude.  I believe the success of our story was due to creating an ecosystem of health care that incorporated a team of doctors, staff, family members and home health providers that successfully assessed our son, Hayden, as a unique individual.  An individual treatment plan and collectively inspired situational judgment led to the best possible outcome for a complex, high-utilizer, traumatized child.

It is a crazy life when you keep a record of surgeries recorded on a blog because there are too many to count and remember. 

July 1st, after over a year of trying to decide with his urologist if the growth on Hayden's stoma was either 1) granulation tissue, 2) keloid scarring or 3) a prolapsed stoma, I admitted defeat and relented to the 25th surgery for my ten years young little boy.  Being a diligent, analytical parent,  I did what I do best when we have no examples around us.  I consulted my many medical social media groups, google researched pictures (don't recommend unless you have a strong stomach) and stayed up late nights with lots of articles read on PubMed.

The instructions for caring for a Mitrofanoff or stoma are so varied and contradictory that it can sometimes be impossible to know what to do, especially when you are new to wound treatment and you are the pioneer in your community.  While there is no one-size-fits-all approach, the following is my personal experience of my daily battle that has no ending in sight.  


Most people are very surprised when they first take a look at a stoma site.  In many cases, the site is shocking to even medical professionals.  Every nurse we have ever had, we have had to train.  Never once has a nurse trained us.  Most ER doctors have never seen anything like it and the hospital less than a mile from our house, will not see Hayden as he is too complex for their comfort level to treat him.

CC4C "Always Be Brave" bracelets for all the medical staff

Any time you cut a hole in the body, whether for an ear piercing or for a feeding tube, the body will launch a response to try to heal itself.  Hayden's an overachiever in this area.  He is a fast healer and develops scar tissue and granulation tissue rapidly. Healing is good, but too fast creates a whole host of problems.  What some may perceive as "gross" is simply the body's attempt at healing. 

Our beloved urologist, with his two decades of surgeries, had been trying to persuade me with his seasoned professional opinion, that the growth was a prolapsed stoma #3 while I argued the merits of #1 & #2 (not the #1 & #2 that you joke about in urology).  My conservative mommy gut advocated my darndest for a chance to battle this growth with all my might to save my boy from another surgery.  I wasn't totally convinced that my surgeon was wrong, but I felt I knew Hayden's body best as I had prior experience with granulation tissue as he had experienced it several times with his feeding tube.  The standard treatment for granulation tissue is silver nitrate.  The treatment looks shocking with black marks that scab all over the skin and is painful for most people but not my strong boy. 

After months of chasing my tail with diligent wound treatment and the persistent mindset of resistance to surgery, the stoma growth only continued.  Hayden's medical battles have taught me while I didn't cause them, I sure try my best to control their progression and to minimize their negative effects on his quality of life.  Many times I fail, but often I succeed in not allowing them to become emergent situations, however, never have I cured him.

After several treatments with silver nitrate proved unsuccessful, I succumbed to seek another treatment and added a dermatologist to our medical team.  The dermatologist was out of her league and like most doctors, she was intimidated with complex/acute/cute Hayden. Fortunately, she listened sympathetically and validated parental concerns. She elected to consult with our urologist to collaborate in agreement with a steroid injection treatment into his stoma.  Unfortunately, after several treatments, the plan was unsuccessful in thwarting the growth or making any noticeable reduction to reduce the size of the stoma.

This was the least invasive surgery Hayden has ever had, yet it was the one he was most frightened and anxious about receiving.

Child Life for the win desensitizing anxiety with tactile and sent distractions getting him engaged with his dreaded sedation mask.

The win came, after my persistent requests of each doctor and nurse that entered the room with granting me parental permission to hold Hayden's terrified and traumatized hand while he was wheeled into the OR until he was able to fall asleep under sedation.  Due to my trusted relationship with our surgeon and the hospital staff, their considerate accommodation allowed me to walk past the dreaded double doors and console Hayden along the way.  

Psychologically, this was the most positive surgical experience.  The built-up anxiety caused by past traumatic memory of painful, lonely, scary surgery has often led to less than desired health outcomes from the surgery itself.  For high-utilizer patients and caretakers, exceptions need to be made to reduce trauma for a lifetime of future medical experiences.  In this instance, true care for the health of the entire family including the caretakers was accomplished.

Our urologist successfully removed the growth without complication.  After medical analyzation, the biopsy concluded it was benign dense granulation tissue.  Mommy gut for the intuitive win.  The battle is not yet over, as inflammation and continued fast healing again contribute to regrowth.  Presently, I have circled back to unrelenting silver nitrate treatments until the medical world and my PubMed/clinical trial friends decide to do yet another study for us to seek participation.