Q&A

“I couldn’t turn away”: Part 2 of our Q&A with Deborah Rhodes

Posted by: Ben Lillie

Deborah Rhodes QA2

In the second part of our conversation with Dr. Deborah Rhodes (read Part One), we talk about the situation in the Democratic Republic of Congo, and her partnership with the Panzi Hospital, which serves victims of sexual violence there. She tells the incredibly disturbing story that got her involved, and discusses what can be done to help American doctors contribute in a lasting way.

I also understand you recently returned from a trip to the Panzi Hospital in the Congo.

Yes, and that visit was also inspired by a patient story. A patient said to me, “Well, of course you know what’s going on in the Democratic Republic of Congo.” I didn’t. She knew of this hospital that served girls and women that had been raped as a result of this ongoing war, where rape has become one of the primary weapons of war. She described these women making their way, sometimes taking days walking, to try to get to this hospital, this place of refuge, where they could go because they had been raped so badly that they had incontinence as a result. She told me one specific story of a baby that was so haunting that I couldn’t get it out of my mind.

Several days later, a friend approached me and said, “I think you’d really enjoy meeting this woman, who is the UN special assistant for women and children affected by global warfare.” My jaw just dropped. “You’re kidding me.” She came in my office, and I said, “I feel like I’m sitting outside Dachau reading that sign that says ‘never again,’ and here it is, and we’re all looking the other way.”

I thought she was going to say, “We’re the professionals, we’re aware of the situation, we’re handling it, and there’s nothing you can do.” Instead, she said, “The situation in DRC is far worse than you can possibly imagine. I think the best thing you can do is get a group of doctors together and go over there, not only to help, but to bring attention to this problem.”

She helped me to formulate a plan and get the necessary approvals. And we arranged for a nurse-midwife at Mayo, Michelle Dynes, with expertise in global maternal-child health, to go to this hospital in advance of a larger team to assess how we might contribute. And then a nurse practitioner in urogynecology, Lois McGuire, offered to help me enlist a team of specialists to travel to DRC.

These were other doctors at Mayo?

Yes. So it was really quite an extraordinary team. In addition to myself and Lois, we were joined by a surgeon who specializes in urogynecology (Emanuel Trabuco); a surgeon who specializes in gynecologic oncology (Sean Dowdy); an obstetrician (Doug Creedon); and a pediatric infectious disease specialist (Phil Fischer) who had worked in the DRC a few years ago before the war broke out, and who spoke fluent Swahili and French.

We contacted the director of Panzi Hospital, Dr. Denis Mukwege, and asked him to send us a list of equipment that was needed, and we got quite a long list back, and we just set about trying to collect the things on this list. We contacted medical supply companies, and we collected surplus that wasn’t going to be used. Mayo has this wonderful warehouse of surplus materials that they very generously donate to humanitarian projects. I had no idea how I was going to get these over to the DRC, but a staffer at Mayo spent hours and hours of his time on the weekend and the evenings helping me pull this off. He was able to contact FedEx, and they agreed to ship our supplies over without payment.

That’s fantastic.

We were stunned. I think it would have been around $30,000 to ship it ourselves.

During the months of planning, I became friends with Eve Ensler, Eve Ensler, who has been a pioneer in bringing to light the issue in the Congo. She agreed that she would come with us.

She’s a visionary. She is somebody who is so trusted and so revered in that country that we had entrée to things that we never would have without her, but most importantly we had an automatic assumption of trust, because we were with her.

It turned out that the UN ambassador’s wife was there at the same time that we were. So all of us — the extraordinary doctors at this hospital, and the members in our group, and Eve, and Christine Deschryver — we were able to be there at this moment when there was immense synergy and ideas and problem-solving and future planning.

What we were able to accomplish in that time was a drop in the bucket compared to what needs to be done, but we were able to leave with an understanding of what our role can be going forward. We are actively working to continue this relationship that we’ve started with this hospital.

One of the things we witnessed most often over there was women and girls that had been raped who had fistula, or connections between their bladder and their vagina, or their bladder and their intestines. You could surgically repair the hole, as these Congolese doctors did more expertly than probably anyone, but their bladders were so shrunken and scarred from the trauma that they still didn’t have enough bladder capacity to maintain continence. So they were no longer leaking because of the hole, they were leaking because they didn’t have any storage capacity. The urogynecologist who went with us, Emanuel Trabuco, believes that there may be a lasting solution for this in a new material that can serve to expand the bladder. He is now working with the company that makes this material to see if they could supply it to us for this purpose. This might be the answer in restoring continence to this sizable group of girls and women.

The second thing is that this hospital does the most phenomenal work. We would go early in the morning over this treacherous route. The roads would be absolute chaos, filled with huge potholes, washed-out, and people diving and darting in front of the car at every turn, and no traffic lights or traffic signs, so traffic going in every which way direction. Then you’d get to the hospital, which is a beautiful refuge behind gates where women and children who’ve been raped actually can live while they’re waiting for the surgery. Many of them have been there for years because there’s no safe place for them to go. We would enter the gates of this hospital, and there would just be so many patients waiting patiently, quietly, in a line, to get to see one of the doctors there.

At first, I don’t think we quite understood the magnitude of what they were expected to be able to do in a day. It would make any doctor in the United States who’s ever complained about their workload feel ashamed. They did this day in and day out.

How many patients would they see in a day?

First, the physicians would gather for morning rounds to review all of the hospital admissions and to teach the large group of medical students. Then there would be rounds on the hospital ward -– one big room for women filled to capacity with so many beds. I saw mothers so ill they could hardly raise their heads, and their small children would be sitting beside them on the cot, playing quietly with whatever object could be made into a toy. Following rounds, an individual physician would have a clinic where they would see fifty, sixty patients in a clinic. And then you were done when you were done. You were done when the last patient was seen. It didn’t matter what time that was.

The problem is, they’re so busy working at breakneck speed every single day, that they don’t have the time, or the resources, to study the outcomes of what they’re doing. And documenting it is the best way to attract international grants and government grants.

So we realized that probably the best thing we could do, for the long term, is help them analyze and publish some of their outcome data. Our short-term goal is to have some of their doctors come here for research training, so that they can publish the results of the clinical work that they’re so incredibly good at doing.

We are going to commit to this in the long term. If we go and do a few things for a week and come home and then think “we’re done,” then we’ve actually done more harm than good. It’s very clear to me that the bulk of the work has yet to be done. Our team is very committed to continuing this work

I understand the original funding came from an anonymous donor?

Yeah, that was another big piece of the puzzle. When I was speaking with this woman from the UN, I asked if she had any ideas for getting funding for this. And she said that there were some celebrities who had expressed an interest in this issue. One of those was Ben Affleck.

And then I ran into this anonymous person, and I had a stack of materials on my desk, reading everything I could get my hands on about what was going on in the DRC. And he saw it and asked, “How are you going to fund all that?” And I said, “Well, I was going to see if I could write to Ben Affleck.” He just burst out laughing, “You’re sitting there doing all this research and doing all this work, and the best you can come up with is that you’re going to write to Ben Affleck?” And I kind of laughed because I realized it probably was absurd, but honestly that was my plan.

Thankfully, he thought there was a more direct route, and became our anonymous benefactor.

What do you need to be able to continue?

We’re going to need to have some kind of fundraising mechanism. Whether that’s giving talks, or writing grants to foundations to fund some of this work. That will be a very important next step, and those things take so much time.

Do you think there are ways of changing the expectations or the institutions here, in the United States, to make this kind of work easier and more routine for doctors?

Yes. There are some really good organizations already that facilitate American physicians going to countries where they’re in need of medical care. Many of them have a religious orientation, and that can sometimes be a delicate situation. Or some of them require a longer-term commitment, like Doctors Without Borders, which is an organization I greatly admire. I really only had a very limited amount of vacation time, and so I didn’t have a lot to work with, and that’s why I set out to do it without these established organizations. I’m sure there was probably an easier or more efficient way for us to get there, and I’m sure that others could have planned it more expertly than I did, but I just didn’t see any good alternative at the time.

Could this trip and the follow-ups could be a template, or even the beginning of an organization, for other doctors to make shorter-term commitments?

That would be great. But what I have learned is that — having a face-to-face visit initially is critically important, because that’s how we established relationships. That’s how we understood their needs in their own words, and got a better sense of how we could fit into that need — but what’s even more important is following through on many of the things that can be done well at a distance.

So the point is that transporting doctors to a remote part of the world is a very expensive undertaking, and that money is sometimes better spent — once you understand the topography — on activities that don’t require a lot of this travel.

On this latest trip you left a large amount of equipment.

Right, and some of it was new surgical equipment, and so a big focus was on ensuring that the Panzi team was comfortable with the new equipment. There’s an enormous need for newer, less invasive surgical equipment and for imaging. And we’re actively talking with some surgical supply companies to see if they would be willing to become our partners in this.

It sounds like a lot of the success was from various companies who were willing to donate equipment and effort.

It was, without a doubt. It was extraordinary generosity. In approaching people for help, I tried not to tell the story in any kind of sensationalist way, because the stories are horrible; they’re just horrible. You don’t want to get into a situation where the focus becomes the stories and not the solution. But even when I would just explain generically what I was hoping to do, I couldn’t get over how much it resonated with people. Every single person said, “I’ll help” and then did. There are certain things in human nature and human civilization that are simply intolerable. This is one of them. If you can get good people to be aware of what’s going on, you can turn the tide; you can be the tipping point, even when you don’t have any power. People will collectively contribute their time and their good ideas to help you. And that’s what we found. It was just astonishing.

The other thing that I would say is that I was not an activist. I was almost a pacifist because I was so busy with my existing work responsibilities that I just didn’t think that I could do anything more than I was doing. Certainly I would become moved by stories, or wish that I could do something when horrible things would happen, but it didn’t spur me to action like this did. I don’t know why I reacted in the way that I did; I almost felt like I couldn’t turn away — although I didn’t think I had time and I didn’t think I could really do it, it was as if I didn’t have a choice. So, what I would say is, just be open to the possibility that you will find your inner activist, and then just put one foot in front of the other and ask for help. That’s all that I did. I just tried to do one thing, and then the next day do one thing, and soon it truly did take on a momentum all its own.

Of course, now that I’ve been there and met these women and these girls, I’m in it for life.

– Interview by Ben Lillie