You might not want to read about this. And I don’t particularly want to write about it. But I am compelled to do so. I am trying to figure out what to make of the seven hours of doctor visits we had with Zoe in Winston-Salem, NC on Friday to understand the cause of her bladder emptying problems. Everyone has asked me if we got answers and if we’re relieved. We did get answers, but I don’t fully understand them. And truthfully, I don’t think I’ll be relieved until the problem is actually resolved. There are many stories here. I’ll try to start with the headlines.
It’s No Accident: It’s Poop, Pressure, and Pelvic Floor Muscles
Zoe has a massive amount of poop backed up into her rectum and colon. Her colon is significantly enlarged because it is a compliant organ, meaning it expands to fit what’s inside, like a balloon, instead of retaining its shape and forcing out the contents. This kind of back-up can occur even if an individual is pooping every day. Doctors aren’t sure what causes poop to back up in some kids and not others, but apparently this problem is much more common than we’ve been led to believe.
The colon is directly behind the bladder. The pressure from the now giant colon on the tiny bladder has disrupted the bladder’s ability to function normally, or Zoe’s ability to sense when her bladder is empty or full. In a normal bladder, the bladder neck opens and closes automatically. It stays closed unless you use your muscles to open it and allow urine to pass through. The muscles you use to control the bladder neck are the pelvic floor muscles. Zoe’s pelvic floor muscles are weak as the result of being in a near-constant state of tension.
The entire situation is more complicated than I fully understand right now, and I have questions into the doctors (which I will post answers to, in case you’re just that interested), but I think this is the bottom line.
Can We Fix It? Yes We Can! (We Hope!)
Friday we saw pediatric urologist Dr. Steve Hodges, pediatric gastroenterologist Dr. John Fortunato, physical therapist Terry Sink. Based on the conversations with all three, the treatment plan for Zoe seems to be laxatives, exercises, and the potty watch. Step one is to get her colon and rectum completely emptied and keep them that way. The idea is that if they stay empty, the colon will return to its proper shape and stop storing poop there. If the colon is normal and not enlarged, there should be no more pressure on the bladder, so she should be able to empty it completely and feel whether it is empty or full and better understand when she needs to go. In the meantime, she needs to do various exercises to strengthen her pelvic floor and core muscles. Terry Sink is going to refer us to a physical therapist in our area who can do additional biofeedback sessions so Zoe can practice squeezing and relaxing her pelvic floor muscles. This should help her gain better control of her bladder function as well. There is no guarantee all this will work, but the doctors are hopeful that it will. If not, well, we’ll worry about that later.
Star of the Show: Zoe
Throughout all this, Zoe was a champ. She did not cry. She did not get upset. At times she got impatient. We brought many activity books with us. And snacks. By the end of the day she was rubbing her eyes and jumping up and down, eager to get out of a doctor’s office and play. But the most upset she was during the entire odyssey was on the way home when we were driving up Route 29 with all the windows down because our air conditioning gave out, and she was frustrated because her hair was blowing in her eyes. I pulled over and gave her an inventive hairdo, a snack, a drink, and turned on the music of her choice, and that seemed to do the trick. She was perky and cooperative and basically much calmer during all of this than I was.
The Origins of Our Medical Mystery Tour
About a month ago, I received an email from a writer in Oregon who is working with Dr. Hodges on a book about the hundreds of kids he sees each year with the same problem Zoe has. She had read our article in the Post and wanted to interview us about our horrible experience with the school system. She sent us two chapters of the book and we were stunned to discover that Dr. Hodges seemingly understood Zoe’s problem. He was the first doctor who had any fully formed insights into the cause of Zoe’s accidents, which we knew (but no one else seemed to believe) were not because she was not potty trained. We talked with Dr. Hodges, who was eager to begin treat Zoe remotely. He checked in with us by phone or email nearly every day for three weeks to see how Zoe was doing. I never imagined I would spend so much time talking about poop, especially with someone I’d never met who is not in my family. He is clearly passionate about his field and has tracked down research from the 80s explaining what he has figured out in his clinical practice, and even talked to the researcher to explore his hypothesis. Our pediatrician was open to Dr. Hodges’ idea and supportive of us working with him and helped arrange the x-ray he requested.
We decided it would be helpful to meet Dr. Hodges in person and he wanted to make the most of our 600-mile roundtrip visit, so he arranged the appointments with Dr. Fortunato and Terry Sink. He also connected us with a patient care representative, Julie Barnes, who was absolutely fantastic. She worked with us remotely to ensure we had directions to every appointment and an ice cream shop for afterward. She arranged for Zoe to play with a child life specialist in one of the Brenner Children’s Hospital playrooms for an hour between appointments. The child life specialist gave Zoe a doll. We also visited the family resource center where we played with a giant anatomical model (if Zoe doesn’t become a doctor after all this, I would be surprised) and got a free book. The people at the hospital–every nurse, every doctor, every technician, everyone–were exceptionally wonderful and helpful. Zoe had eyelid surgery a year ago at Children’s National Medical Center in DC, and while that was fine, and her surgeon was great, we received nothing that could be called special customer service or anyone doing anything out of the ordinary to keep us informed or make us comfortable. We are grateful to Dr. Hodges, Dr. Fortunato, Terry Sink, Julie, and Wendy (who played with Zoe in the playroom) for their care of Zoe and our family. It remains to be seen what will happen with Zoe. Dr. Hodges seems to think that it will take a few weeks to a few months for all this to work, but if it does, she should be accident free. At which point I will be relieved.