A doctor reveals her hidden disability

By Louise Kinross

Dr. Paige Church is a neonatologist at Sunnybrook Health Sciences Centre and a developmental pediatrician who sees children with spina bifida at Holland Bloorview. Last Monday, she wrote about what it’s like to be both a doctor and a person with a disability in a JAMA Pediatrics article. Paige has spina bifida, and she begins the riveting piece with her own medical record.

BLOOM: You and I did an interview a couple of years ago, but you decided it wasn’t the right time to share your story. What changed?

Paige Church: I think our conversation instigated a lot of reflection, and then maturity and time added perspective. I had to think and think and think about how to tell the story in a way that maintains dignity and privacy, but that draws attention to the issues that are woven into it.

BLOOM: What do you hope health professionals take from it?

Paige Church: That we need to start being more individualized, and not textbook, in conversations with parents whose child may have a disabling condition. Trainees at times have found it frustrating that there’s no formula. They want to cling to ‘If this happens, then this is what I do.’ I think when it gets into conversations around disability and living with x, y or z, it isn’t that easy to formulate that life into a simple package. Messaging that it is simple is a mistake.

BLOOM: How were you taught to counsel parents about a pregnancy that involves a disability?

Paige Church: There are essential components that need to be conveyed, but we make the mistake of simplifying it to such a degree that you can do it the same for everyone. We need to focus a lot more on exploring [each] family's structure and values and perspectives. I might spend an hour just talking to one couple about who they are: Their jobs, their values, their religion, their extended family, their thoughts about disability.

And then convey essential information in real-life terms, not medical labels that often don't make sense. We need to describe the day-to-day outcomes that are possible, and explore how this information fits into a family and their resources and challenges. There isn't a specific recipe for any given condition. It has to flow from the questions, concerns or insights that [a particular] family shares.

I worked with and learned from Adrienne Asch, who was an American bioethicist and disability advocate. She taught me a lot. She challenged me to think about how families are not clubs. You don't pick your members. Certainly I want children to feel loved and accepted and that factors into my counselling significantly.  

BLOOM: In your article you talk about how the effort to appear normal in your life and work is exhausting. What motivated you to want to appear normal?

Paige Church: I might be making a sweeping generalization, but I think for kids who grow up with a disabling condition like mine, where there are no outward signs, you have two paths to walk when you get to school. One is that the school treats you like everyone else, and you keep quiet about your extra issues. The other is to start sharing information that is quite private. When you get into bladder and bowel management, how do you do that in a way that isn’t stigmatized or bullied? As a child, I think I just perceived the stigma and decided to go the way of least resistance, and keep this all very quiet.

BLOOM: I’ve heard some unbelievable stories about children who are incontinent, and how they don't drink for the entire school day to avoid having an accident.

Paige Church: Yes, this is a strategy that's used. It's not a good one, but it's reinforced because it works, at least in the moment. I certainly have used it myself. It’s a strategy we use when we can’t afford to have problems. When I had an appendicocecostomy, my surgeon said ‘Why am I doing major surgery on you?’ I said ‘Do you realize that I've been limited to eating a handful of crackers for the whole day? I can’t afford to have an off day. I can't afford to not be available to go into an emergency in the NICU.’

BLOOM: I wasn’t clear on what that surgery was.

Paige Church: The distal end of the appendix is cut off to create a hollow tube and channelled through the abdominal wall to make a stoma you can put a catheter into. This is an option for some children with spina bifida and other conditions associated with fecal incontinence to evacuate the bowel once a day in a controlled setting. 

BLOOM: But before the surgery you didn’t eat during the day? So you were starving?

Paige Church: I’ve got more dental bills than I can count. You eat candy most of the time.

BLOOM: Doesn’t it seem unfortunate that a person has to have a major surgery for incontinence?

Paige Church: No. It was life-changing for me.

It takes the pressure off. It gets you back to being like everyone else with a degree of control over these private functions. It still isn’t perfect. But if six out of seven days are more controlled, it allows you to focus on other aspects of your life, without being consumed by worry.

BLOOM: Because you have firsthand understanding of spina bifida, you must have had unusual conversations with youth with spina bifida, in the early days before you shared about your experience.

Paige Church: Early on I looked like I was a real expert, which was kind of nice. I knew a lot of the intimate details. Over the years I’ve learned there’s no way to say ‘I have spina bifida, too,’ because there are a thousand different types and many ways a person can be affected.

As a resident, I once shared when a baby was just born that I had spina bifida. But the baby’s level of involvement was different than mine. It set the stage for expectation, and, as a result, I worry that it did more harm than help with bonding.

Now I share my story on an individual basis. It may be with parents when their children are toddlers. Or with older children who are struggling with some aspect of the condition, and I can share my story to lend insight.

BLOOM: In your article you talk about how the medical world views disability in a black and white way as a negative. You were taught that telling someone they have a disability is equivalent to telling someone they have cancer or will die.

Paige Church: Absolutely.

BLOOM: What I got from the article was that your experience of disability is the opposite of simple. That’s it’s rich and complex and full of ambiguity.

Paige Church: Yes, and that richness and ambiguity is not captured anywhere in medicine. For every horrible thing I’ve experienced, I can say there are five things that have been great. For example, if I didn’t have spina bifida, I wouldn’t have my daughter, who we adopted. And my life would not be full without her. And I wouldn’t want my own child in a trade for her. If I could have, I’d have had more of her.

BLOOM: You note in the article that your challenges with spina bifida helped you pick a fabulous husband.

Paige Church: It shapes who you are. Because of some of my obstacles, I grew and changed. I kept looking and waiting for someone who wouldn't see the challenges, but rather would see me.

BLOOM: You say that you provide counselling that is balanced, sensitive, thoughtful and individualized, rather than objective. What does the word objective mean in medicine?

Paige Church: It’s supposed to mean you don’t have any bias. You’re not bringing into the discussion anything that is subjective or is your interpretation. That’s not necessarily a bad thing. But it does become a problem when you think about the fact that it’s impossible to not have some degree of inherent subjectivity.