Bringing light to an unsavoury topic — the longer version

(For shortened version in Free Press, with photo, see here.)

A disease that constipates thousands of Canadian children hides in obscurity because of our discomfort talking about excrement, a Winnipeg mother says.

Liz Crawford is trying to change that with her coy campaign, “Shit Happens,” banking on humour to spread awareness.

“It’s the funny moments, because you’re in the trenches, you’re in hell, more or less, when you’re beside the hospital bed and you’re trying everything and all you want — and I’ve been there with my girlfriends and my family and we’ve been standing beside his bed for 24, 40 hours, waiting for him to poop, trying every two hours, and when he does, honest to God, you are so flipping happy when it happens. It’s like the best thing that ever happened. It’s those moments, those moments of pure comedy and joy and being covered in shit that totally sum up this disease because there’s so many highs and lows and the highs are when you have those moments.”

Hirschsprung’s disease, named after the doctor who was one of the first to diagnose it in the late 1800s, affects nerve endings in the large intestine, preventing colon muscles from contracting and preventing the baby from passing stool. One in 5000 is born with it.

Crawford, for one, was relieved to get the diagnosis after her son Malachi spent three scary weeks in the hospital, bloated, in pain, vomiting — “Basically because I had a nurse tell me that I should make peace with the fact that I may never take him home. It was that bad. So when they said Hirschsprung’s — it’s something that they live with — I was like ‘Lottery! I’m out!’”

The disease is usually treated with surgery that removes the abnormal colon and pulls down healthy colon to take its place. But surgeons often wait several months for the baby to get big enough to handle the surgery. During those months, parents like Crawford must perform bowel “irrigations” and “dilations” several times a day to prevent stool from building up. An irrigation consists of sticking a catheter tube into the intestine to flush it out with a saline solution. Dilation sometimes follows: using a thin cylinder to stimulate nerve endings in the intestine.

While the surgery improves the body’s ability to pass stool enormously, surgeons need to leave a small section of diseased sphincter, the muscle that controls the exit of feces from the body. So, many kids with Hirschsprung’s, like Malachi, still struggle with constipation and require periodic irrigations or enemas.

“It’s a messy job and it’s an invasive thing. I worked in fashion. Nothing prepared me for winding a catheter up an intestine. I kept saying, ‘I’m not sure I’m qualified for this,’” says Crawford, a former international model who now owns a modelling agency.

Eventually, people with Hirschsprung’s are able to live pretty normally, says Winnipeg pediatric surgeon Dr. Nathan Wiseman, who’s operated on more than a hundred babies with the disease over the years. “As a group, they seem to be a pretty normal, well-adjusted group of people who seem to fall into society at any level,” he says.

In the meantime, Crawford wants to make it so that parents who get a Hirschsprung’s diagnosis don’t have to say “what’s that?” – and so that people who have the disease don’t fear ridicule from people who don’t understand it.

Crawford is mounting a photo campaign of celebrities wearing t-shirts that say “Shit Happens.” Canada’s Next Top Model winner Meaghan Waller, who happens to be represented by Crawford’s modelling agency, has already donned the shirt.

The other parts of Crawford’s mission are a blog telling Malachi’s story and a Facebook group (conservatively called Hirschsprung’s community) that’s got parents sharing stories from around the globe. “There’s three mothers in New Zealand who now have one another and they met on the Facebook site,” Crawford says.

Another connected parent is Taiisha Bradley, a university professor in Tennessee whose four-year old son with Hirschsprung’s still needs constant irrigations.

In her everyday conversations, it’s hard for Bradley to bring up: “You don’t say ‘Oh hey last night I gave my son an irrigation and I put my pinky finger in his rectum and he shit all over me and the wall, ha ha ha!’” Bradley says sarcastically. “It’s just not funny to anybody else and you don’t want to tell anybody that that’s what you’re doing to your newborn, because they’re not going to get it. And you know, when you find someone else who can laugh about it, it’s just like a relief because you feel like you’re the only person in the world going through this.”

A 24-year-old California woman with Hirschsprung’s continues to deal with blockages into adulthood and has had roommates move out because her gas – but is now starting a Master’s degree, unfazed: “I’ve made it through the hardest part of having Hirschsprung’s,” Stephanie Dolak says.

But Crawford was least prepared for the sad stories that have surfaced on the group: a child who died from complications, another who spent two years in hospital and required 25 surgeries.

Pediatric surgeon Wiseman says stories like these are very rare, and are to be expected when you reach out to the whole internet.

Wiseman questioned the vulgar language of Crawford’s t-shirts, at first. Crawford jokes that he refuses to wear one. He says they don’t carry his size.

Wiseman says he’s come to accept the language and his grandkids now wear the shirts. They even explained the reasoning behind the wording to their perturbed auntie.

“It’s a bit in your face but ultimately if you think about what the prayer of the parent of a child with Hirschsprung’s disease is, it’s that they have bowel movements,” Wiseman says.

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5 thoughts on “Bringing light to an unsavoury topic — the longer version

  1. Thank you William, you did an excellent job of portraying the life of a HD family and for that we are all grateful. All the best, Liz and Malachi

  2. It’s great to see this topic receiving some light! I help manage the infants, children and families with this disease along side Dr. Wiseman. It’s not common enough to discuss it with your neighbors – most people don’t get it nor do they understand the struggles they have. But opening this up to the world will create a massive support group. Hopfully families will find comfort in linking with other families but taking negative stories with a grain of salt. Every family will experience this disease differently but everyone has one thing in common….S-happens!!

  3. For clarity, dilating the rectum with a small finger or dilator may be necessary to stimulate the sphincter and trigger a bowel movement for kids with HD

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