This critical-care doctor's perceptions of disability changed after her child was born with a brain injury

By Louise Kinross

Catastrophic Rupture is a memoir by Dr. Jane Lee, a Wisconsin physician who works with children with complex medical problems and disabilities. Fifteen years ago, when Jane's daughter Josephine (Jo) was born with a severe brain injury, Jane found herself on the other side of the fence as a parent. She struggled to bond with Jo and envisioned "a lifetime of fruitless struggle caring for a child who might never really be a person," she wrote. "My love and my perception of her value as a person were still erroneously bound to her abilities." In her book, Jane recounts how her thinking about human value changed over time. She hopes her story will help medical professionals see their patients in a new way.

BLOOM: Why was there a need for this book and who do you hope reads it?

Jane Lee: There were two reasons. One was to let other parents like me, who maybe had some of the negative thoughts and emotions that I had, to let them know that they're not alone. That they're not bad people or parents, and that there's hope for them to get to a point where they can have a really good relationship with their child, like I did. So parents are one big audience.

The other audience is clinicians. I knew that I had gone through a big transformation in my perspective and I know that other clinicians are still where I was when I started out in the way they view disability as a whole and children and families. As a doctor, I wanted to bring them along with me and get them to where I ended up, without having to go through the same experience.

BLOOM: One of the first scenes in the book is you admitting a child with seizures to the PICU. What I got from the scene was how well the mother can read her child, even though the child doesn't speak. The mother comments that her daughter likes you. But as a doctor, you think this mother is deluded because she believes her child has an inner world and preferences. Why is it so hard for physicians to see children with disabilities, especially brain injuries, as full human beings?

Jane Lee: Part of the reason is that we know what we see when we take care of these children in the hospital, and we think that's the full truth. What we see is when these children are ill and not feeling well and going through something medical, so they're not going to be as open and communicative. They're not going to be their full selves. We delude ourselves into thinking that what we see is all there is, and we don't want to trust the family that there's more to the story.

BLOOM: Where would a distrust of the family come from?

Jane Lee: There are a couple of possibilities. We think this is our realm, that we are the experts in it and we don't want to accept the expertise of other people. The other possibility is that we only trust what we can verify ourselves. We don't want to take the word of someone else. 

BLOOM: But wouldn't it make sense to trust someone who spends the most time with the child?

Jane Lee: That's an interesting point. Because especially with children who are admitted frequently to the hospital, the clinic team gets the idea that they do spend a lot of time with them. They think 'I know this child well and the family well,' but they really don't, because they're only seeing a little snapshot. They don't spend the kind of time in all sorts of settings that the family does, and it takes a lot of time to learn how a child communicates when they don't communicate in a conventional way. The whole clinical team can fool themselves into thinking that they do spend a lot of time with the child.

BLOOM: In your training to be a doctor, did you ever get to meet with families with children with disabilities outside of the medical setting, to better understand their world?

Jane Lee: There was one two- to three-hour block when I was in medical school where we each spent time with a family. We did a home visit. But there was so much to cover in that time, I don't feel like we really got a full picture. To be really valuable, and to understand all of the nuances of that experience, you would need multiple visits across time with one family, or maybe multiple visits with different families with different situations. 

BLOOM: Why don't medical schools invest that time?

Jane Lee: There are so many competing demands in that four years of school that the medical school leadership prioritizes things like that lower. 

BLOOM: You're talking about technical things?

Jane Lee: Yes, like how to interpret a blood gas and how to treat respiratory failure. There are so many things they need to learn that it's hard to get people to pay attention to the humanistic side of medical care.

BLOOM: At first, when your daughter Jo is born, you struggle to see any value in her if she doesn't have regular abilities. In fact, you question whether she can ever become a person. How did your thinking change over time?

Jane Lee: Initially, especially given her lack of awareness, I really questioned whether she had any ability to interact with the world and whether there would be any reciprocal response to anything that was going on. I wondered whether we could ever know what was going on in her head, and how she would ever be able to express herself in any way. 

As time went on, and I don't know whether it was more a change in her or me, or both, I could see she was expressing herself and interacting with the world and me and I began to appreciate that, and to appreciate her as a full person with thoughts and feelings and experiences of her own. 

I think part of it was me spending that time with her and learning to read her cues and learning to understand what she was trying to tell me.

BLOOM: How would you counsel parents of a young child who are concerned about their ability to connect due to their child's disabilities?

Jane Lee: It's patience and hanging in there and taking the time to really just let the child develop and paying attention to what the child is expressing. I don't know that that's particularly a revelation for parents, because most parents do try to do that. But having them understand that sometimes it just takes time, and they need to be patient.

BLOOM: Your daughter was very ill early on and had infantile spasms, so that must have interfered with her development.

Jane Lee: In our situation, Josephine had started to make some improvements and to have some development in her ability to interact and express herself. Then, when the infantile spasms started at age six months, we really took a backslide and she lost a lot of that awareness and interaction. I didn't know what was going to happen after that, if she would ever regain that. If someone had told me back then 'She's going through a medical complication and she's not at her best right now, so you need to be patient and have hope that things will get better,' I think that would have been helpful to me, to know that this isn't the final word and we needed to have confidence that with time things would settle.

BLOOM: What was most challenging about writing this book?

Jane Lee: The sense that I was afraid that I wasn't going to do justice to the story, and the story not just of us, but of other families like ours. I had this sense of responsibility that while I'm telling my story, I'm also speaking for other families and speaking for my daughter and I wanted to make sure that I was doing right by them. 

BLOOM: I think what makes the book unique and powerful is that you had the experience of being a doctor to those families before you became one of them.  

Jane Lee: I'm hopeful that that will make the clinician audience take it more seriously. It's one thing to read about a family's perspective and have clinicians not be able to identify with that perspective, because it's so different from their own. But by telling the story this way, clinicians can see themselves initially at the place I was and grow. I hope that allows the book to be more accessible to clinicians.

BLOOM: How did having a child with disabilities change the way you practise medicine?

Jane Lee: It's really opened my eyes to trusting a family when they say something about their child. They're the experts in that area and they do have a very valid and truthful perspective on what's going on. 

I'm much more likely now to partner with families in terms of what they're seeing and thinking and take their word for it. 

The other thing is I'm much more engaged with the child with disabilities. I treated them in a kind manner before, but it was a distanced manner, because I didn't know how to connect with them.

Now I have a much better sense of how to do that and if I'm not making a connection, I'm not afraid to ask parents: 'How does this child let me know x, y, z' or 'How do I communicate?' or 'What are some of their cues?' I'm less standoffish about that. I'm also more likely to be supportive and encouraging of the family who wants to try different things that are maybe not what I would have recommended. If a family has a suggestion for something to try, I'm more open to that.

BLOOM: Since exposure to kids with complex medical problems didn't enable you as a doctor to see a child as more than a medical diagnosis, how can we hope to expand the thinking of student doctors and practising doctors?

Jane Lee: They really need more exposure to the family side of it. We need to move beyond the clinical setting and have more conversations, read more books, watch videos or use any mechanism that allows physicians to understand that what they're seeing in the exam room is not the full picture, and there's a whole multitude of other facets of that child and family.

I'm trying to get the word out there and get my book inserted into various curricula. So far I've had more success with nursing. Tonight I'm speaking to a class of nurse practitioners and that program is going to incorporate it as part of their regular curriculum. I have some discussions set up with one medical school, but I don't yet know of any medical schools that are planning to incorporate it as a part of their standing curriculum. 

BLOOM: Earlier this year I interviewed the author of a study that found that the vast majority of over 700 American physicians believe people with significant disability have less satisfying lives than nondisabled people. 

Jane Lee: This anti-disability bias is pervasive. I'm working right now with a small group at the American Academy of Pediatrics to write a policy statement on ableism and anti-ableism. It will be a couple of years before we're finished with it. There are people thinking about it and working on it, but it's going to be so hard to change. The bias is bad in the culture of medicine but it's also really prevalent in society in general. I think people's stories are one way to change it, but it's also a matter of getting the medical schools to pay attention to it and give more time to it in their curriculum.

BLOOM: In one part of the book you talk about physicians counselling parents about whether to continue life-saving treatment, and how they point out all of the things a child won't be able to do, that they'll never walk, never talk, and on and on. You say that now, on the other side, as a parent, you realize those things aren't necessarily what matter to parents. Can you explain?

Jane Lee: I think that in medicine and in society we're very focused on skills and tasks and abilities. We equate whether the child can do or not do things with what their ultimate quality of life will be, and we don't recognize that there's so much more to quality of life, and that having a disability doesn't mean that you're not going to have a robust and fulfilling and enjoyable life.

Other than exposing people to stories like mine and those of other families, I don't know how to help people understand that.

I look at my daughter and she has so much fun. She loves her life and she's a vibrant individual. Despite the fact that there are many things she can't do and will not ever do, that's okay. She still has a robust and fulfilling life and I don't know that I would have believed that if I hadn't seen it with my own eyes. How do we get other people to believe that? 

BLOOM: It's interesting that there are a number of self-reported quality of life studies where people with disabilities like Down syndrome and cerebral palsy rate their quality of life to be on par with the general population. But it seems to be hard for medical professionals to get behind those studies.

Jane Lee: And then you may have people like Josephine who can't answer the question 'do you enjoy your life?' and can't answer the surveys, so she depends on other people to interpret her quality of life for her. I can clearly interpret her quality of life and it's a valid interpretation, but other people might question that because she's not speaking for herself. 

BLOOM: Can you give us a bit of an update on Jo?

Jane Lee: She's 15 years old and a sophomore in high school and she's really doing well overall. She's made a lot of progress in using her communication device and she's very communicative and has a lot of opinions that she shares.

BLOOM: Was that the eye gaze device? 

Jane Lee: Yes, she's getting more and more skilled at using it and able to navigate it better, but it certainly still has limitations and challenges. Each screen on her device has eight different squares with some messages that link to other pages. For example, on her home page there's a people button and she activates that by looking at it for a second, and the machine knows she's looking, and it takes her to another page with types of people, such as family, friends or classmates. She can choose which of those she wants and she'll get a list of eight different pictures of people. At this point she can't use a keyboard to spell words or messages, so she's limited to the content we put on the device. 

BLOOM: What are her favourite things?

Jane Lee: She loves music. Her big activity this past summer was going to concerts in the park. Country music is her favourite. Her second favourite is Christmas music. 

She loves seeing people. She's a very social child and she likes to be where there are people. She loves animals. When we go to the park she likes to meet all the dogs and pet them. She loves her family, not just her immediate family and brother, but seeing her grandparents and aunts and uncles. She's in a regular school but she spends most of her day in the special education class. She joins some of the regular classes, like choir.

BLOOM: Are you happy with her schooling?

Jane Lee: Overall yes. They've done a great job letting her be included to the extent that she's able to.

BLOOM: In the book you write about your husband Jason, who was an emergency medicine doctor, staying home with Jo when you went back to work. Does he still do that?

Jane Lee: Yes, he stopped practising when Jo was a year old. I'd already been back to work for nine months and it wasn't working for both of us to be out of the home.

BLOOM: You went back when Jo was three months old?!

Jane Lee: Yes, 12 weeks of maternity leave is on the long end in the United States. Some people only get six weeks. Having Jason at home works really well for us. My son is 17 now and the relationship between him and Jo is wonderful. It's not a typical sibling relationship, but I really feel like they each get a lot out of it.

Today Dr. Jane Lee is a pediatric complex care physician at Children's Wisconsin and the Medical College of Wisconsin. She previously worked in pediatric critical care for 15 years. All author profits for her book are being donated to the Complex Care Program at Children's Wisconsin and the Medical Humanities Program at the Medical College of Wisconsin. 

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