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I just started reading The Immortal Life of Henrietta Lacks by Rebecca Skloot, about a woman whose cervical cancer cells were harvested without her knowledge and grown in a lab at Johns Hopkins and subsequently shared with labs all over the world, leading to a phenomenal array of medical discoveries and cures, all while Lacks’ family remained impoverished and without health care of their own. I learned about the history of the Pap smear (named after Greek doctor Georgios Papanikolaou). Then I went to the doctor for my own annual gyn exam, where a wonderful doctor I’d never seen before gave me much more detailed and helpful information about ovulation and conception than any previous doctor (and I’ve spoken with many) has provided. I told her about the book. She was interested and told me what she’s reading. Then I got in the car and the story on NPR was about women giving birth in Mozambique and how access to a drug called misoprostal has dramatically changed life for women there by reducing bleeding after childbirth, which is a leading cause of maternal death there. The story featured traditional birth attendants as well as World Health Organization doctors. The traditional birth attendants concluded their interview with a song of thanks for their training and a request for more misoprostal.
The struggle to have babies or not to have babies or not to have too many babies is universal, but it’s easy to forget how much luxury we have in this country, in 2011, when we are white and middle class and have health insurance, to get help in making these choices and acting on them. We may not be able to control whether or not we have a baby and when, but we can come pretty close. Our system is far from perfect, but I’ll take it.
Zoe is so angry and frustrated with herself, and with us for reminding her all the time that she needs to use the bathroom, do exercises, listen to her watch, listen to her body, listen to us, follow the doctor’s orders. She wants to be normal. She wants to be able to trust her body. She’s so tired of this. I don’t blame her. She is so upset and really struggling to express why. We don’t get mad at the accidents, but we struggle to deal with the bad behavior that results from her feeling like she has no control over her body. This problem may have an explanation, but that does not translate neatly into a solution, and so far I think what we’ve done is completely overwhelm Zoe. It’s a mess.
Meanwhile, we can’t seem to find a physical therapist in the DC area who does pelvic floor rehabilitation, including biofeedback, with children. This person exists in Winston-Salem, so it would stand to reason that someone around here could do it, but we haven’t yet located that person. If you know of someone, please let me know.
This is certainly more than you wanted to know if you’re just about anyone. But I’ve heard from a few friends since my Compliant Colon post that their kids have been going through something similar. So for them, and for anyone else who’s medically inclined, I will continue.
I posed my questions to Dr. Hodges and he said I already understood more about the condition than most urologists in the world. Last night at bedtime Zoe wanted to play a game she invented called “What’s My Job?” She was guessing what job I had and she had figured out it was a doctor. “Are you a urologist?” she asked. Good guess. (I was an eye doctor).
So here’s what Dr. Hodges had to say in clarifying my understanding of what’s happening in Zoe’s body:
It’s actually the rectum, which is the end of the colon, which is the end of the large intestine, that’s directly behind the bladder. When the rectum is dilated (enlarged) it “encroaches on the bladder, activating pelvic nerves that make the bladder overactive, and making it difficult to relax the pelvic floor muscles correctly, which then makes the bladder strain to void, also making it more overactive.” So the poor little bladder is just getting hit from all sides, basically.
When she has these accidents that happen approximately five minutes after she’s used the bathroom and seemingly emptied her bladder, it’s because her pelvic floor muscles weren’t completely relaxed so the urine did not all come out, even though she felt like it did. Her bladder is likely hypertrophied (thickened, from straining, like any other muscle), which may cause forceful contractions without warning, which also causes accidents.
At least I’m learning something.
Being in the children’s hospital on Friday reminded me of something I’ve been thinking for several days now, trying to put all this in perspective. Everyone’s got something to deal with. Right now among friends and family are people coping with cancer, diabetes, divorce, degenerative diseases, epilepsy, miscarriage, birth defects, sleep disorders, joint replacements, infertility, various undiagnosed childhood challenges, and probably countless other struggles I know nothing about.
I was blessed with a lovely and stable childhood from which I emerged relatively unscathed. It wasn’t until college that I faced meaningful defeats and witnessed plans going terribly awry. As an adult, and really mostly in the past five years, have I understood a little more about the universal state of suffering that the Buddha described. Still, I know I am incredibly lucky. I am healthy. I have a close, loving family and warm, wide, supportive concentric circles of friends. I have a thriving, fulfilling business. Although sometimes we feel poor we have more wealth than most people on Earth. I have a kind, empathetic husband and we are raising a phenomenal little girl. But we, like everyone, have our stuff to deal with. And so it goes.
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.
Last night Zoe came in our room at 2:30. I put her back to bed. She came in again at 3:30, terrified. She had woken up from a bad dream so disturbing that she repeated to me several times, “All I want to do is be awake in the daytime. I don’t want to sleep at night anymore!” We were intermittently awake until 5. She was more upset than I’ve seen her from a bad dream in a long time. During the night, she wouldn’t tell me what happened in the dream, but this afternoon she said it had to do with aliens who took control of a plane she was riding in.
Tonight at bedtime we talked about more pleasant and fun things she might dream about. I’m not sure if it’s because of a developmental growth spurt or her memory improving or some other factor, but almost every morning lately she has reported about one of her dreams. They have included:
- Daddy riding a giant slinky.
- Zoe playing a small accordion, then a larger one, then a small one again.
- Zoe planning a camping trip with Tigger which had to be moved inside because of rain. So they cleared the clothes out of one of Tigger’s closets and set up the tent in the closet, and then had lunch inside.
Juxtapositions. From many vantage points throughout the city you can see unusual urban architecture, snow-capped mountains, and rocky beaches or shimmering water at the same time. I loved that there are beautiful landscapes everywhere even when you’re right in the middle of the city.
My daughter. She was a phenomenal traveler. She loved the airplanes (she had her first gum to clear her ears during the descent into Baltimore), she loved the hotels, she blazed fearlessly across the Capilano Suspension Bridge and the treetop adventure on the other side. She was up for any
adventure in any neighborhood. She made friends with eight- and ten-year-old sisters at a playground in Stanley Park. She loved the story of the Raven, a First Nations trickster tale that they broadcast on the miniature train we rode through the park.
Intergenerational mosh pit. We went to the the Vancouver International Children’s Festival on Granville Island and watched a performance by Quebecois folk and roll band Mauvais Sort. They asked for people to come down in front of the stage and dance. The request was answered by a group of preschoolers and toddlers and a group of tweens, who co-existed peacefully on the dance floor throughout the performance. The older kids danced and had a great time but were totally respectful and nice. I was amazed.
The Regional Assembly of Text–a really cool store for font, design, and print nerds like me. They have a letter writing club once a month where they set out a bunch of typewriters and people come to type letters.
The Vancouver Aquarium–I’ve visited many an aquarium in my day and this was one of the coolest. I especially liked seeing the Beluga whales and the dolphin show. I didn’t like so much waiting in line for the 4D movie only to have Zoe crying the first minute of the film when we were spritzed with water to feel like the whales were splashing us and we had to leave the theater. Oh well.
Slickety Jim’s Chat ‘n’ Chew–a fun restaurant with an awesome name and amusing menu. The food was good too.
Kidsbooks–the best kids bookstore ever. Wish we’d gone earlier than half hour before it closed for the day.
Haida art–animals drawn or painted in the style of the First Nations people indigenous to the region that now includes Vancouver.
Shore 104.3–a fun radio station that plays music I actually like listening to, or introduces me to new music I happen to like. There is no radio station like this in the DC area.
Bloedel Conservatory in Queen Elizabeth Park–colorful birds flying around amid tropical flowers in a geodesic dome surrounded by a fountain and people doing tai chi and a wedding. What more could you want? Our trip was fantastic and, after a week back at work, I wish we were still there.
I’ve discovered that I love Haida art. Until this week I had never heard of Haida art, or the Haida people or mythology. Vancouver is filled with First Nations art, artifacts, and cultural references. I think First Nations is a much better term than Native Americans to refer to the people who lived on our continent before our own (or at least my own) ancestors arrived. Americans is what we are, and the native people were their own tribes with their own identities before anyone called the continent North America or the country the United States of America. First Nations gets it right that they were here first. I don’t know anything about First Nations history or whether these people were as brutalized as Native Americans were by the US government. Something to read up on. But I do love their art, and it’s everywhere. I have resisted buying potholders or keychains featuring the Raven, but I have found some beautiful cards featuring paintings by Bruce Morrisseau, Norval Morrisseau, and Roy Thomas.
Another small piece of ignorance undone–I’ve discovered that French is more widely spoken in Canada than I thought. I have been to Montreal and Quebec and knew that everything there is bilingual, but there seems to be a lot of French around here too. At the Vancouver International Children’s Festival, Zoe and I enjoyed a performance by Mauvais Sort, a folk rock group from Quebec. They sang in French. Not that it mattered. The music was fantastic and both toddlers and tweens crowded the dance floor in front of the stage.
Today I tried to teach my child what exploring means. That you don’t necessarily know where you’re going. You’re just going. To a small person who is fully immersed in the “when will we be there?” phase, walking for the sake of walking is a challenging concept. But this morning, she aced it. We left our hotel in search of a breakfast spot. There are many coffee shops in Vancouver, even besides Starbucks, which is just as ubiquitous here as it is in DC, and I am determined to sample them. We found a lovely spot where she had a parfait and I had a prosciutto and egg breakfast panini. They’re into paninis here, which I endorse. Covering one wall of the coffee shop were newspaper centerfolds of Canuck players. I appropriated a newspaper from a nearby table and explained what hockey is and why the people of Vancouver are so excited about it right now. We sounded out the “DROP THE PUCK!” headline on the front cover of the tabloid.
Then we walked. We found a mosaic-tiled fountain by the Vancouver Art Gallery. We spent quite a while in the gift shop of the museum, although we didn’t go into the exhibit because I didn’t want to pay for both of us knowing Zoe would want to zip through it in about two minutes. The gift shop was outstanding (I am a connoisseur of gift shops) and had an extensive section for kids. Zoe found a bowl of cats and played with them for a while. She kept asking me to petsit her cats so she could buy supplies for them, but I was trying to shop. I bought her a book about Rene Magritte, one of my favorite artists, after she had looked at some of his work in the shop. We read it tonight at bedtime and she said she thought his paintings were pretty cool.
After that we found more sculptures, an ice rink (where Zoe said she wanted to learn to skate this winter), and many many steps to climb up and down. We were near the court buildings and I saw several men with white judicial collars. We walked down Robson Street and ducked into a few shops. We made our way back toward the water, finding lunch at a market and eating on a bench in Harbour Green Park, overlooking Burrard Inlet. We watched seaplanes take off and land. We watched joggers, walkers, and cyclists go by. Zoe ate an entire apple. Then we checked out the sculptures at the Vancouver Convention Centre before retrieving our car to visit the Vancouver Aquarium. Clearly this last bit isn’t accidental wandering, but a plan made while we were looking out at the water.
The aquarium was excellent and we saw a dolphin show and several beluga whales. I’ve never before been so close to dolphins or whales, and it was a fun outing. Seeing the dolphin show made up for the fact that we had waited for 15 minutes in line for a 4D movie, and had sat through a public service announcement and the first minute of it when Zoe started sobbing and asking to leave, after having solemnly pledged to be brave (before we entered the theater). She may be extraordinary, but she is still four.
I am a planner, and Zoe constantly demands information and answers. So several hours of exploring were good for both of us.