The Ebola Diaries: Trying To Heal Patients You Can't Touch

Feb 12, 2015
Originally published on December 3, 2015 10:34 am

For six weeks, American doctor Kwan Kew Lai kept a blog, almost every day, while she volunteered at an Ebola treatment center in Liberia.

Ebola treatment centers are isolated, self-contained worlds, with their own grim rhythm: Every day, people stream in, terribly sick. And in the space of a few days, they either live or they die. Then the next wave arrives. Because the risk of infection from Ebola is so high, access to the ETUs has been severely limited. So we've had only brief glimpses into them.

I visited a number of these centers while covering the outbreak. But I don't think I fully grasped what it has been like on the inside until I read Lai's blog.

On Morning Edition Thursday, we broadcast an audio documentary based on Lai's blog and her experiences working in an Ebola treatment unit in Bong County. Here are some excerpts from the blog, edited for length and clarity.


Lai started her first shift on Oct. 17, 2014. She's 64 and petite. And she wrote that on that day, just putting on protective gear was a struggle:

The goggles given to me were so huge that they pinched my nostrils, making breathing difficult. Soon, it fogged up, making me feel like I was underwater, snorkeling. I gazed at my surroundings through a thick haze.

In the midst of this flurry of activities, a patient in triage met the criteria for suspected Ebola. I went with another nurse to fetch him. He was absolutely petrified at the sight of us in our full PPE. With the dark ominous rain clouds hanging very low in the sky, harbinger of a severe rainstorm, we must look like hovering specters or ghosts.

We helped him into the ward. His pants were soiled with loose stool, so we changed and cleaned him. He was breathing fast and looked dehydrated. We gave him a bottle of oral rehydration solution, and the night shift would start an IV. What was it like to be cared for by us all dressed up in hazmat suits when the comfort of human touch was gone?

As we departed, the rain came pelting loudly down on the tin roof, offering little solace to this lonely man covered by a white sheet, left in a strange blue-­tarped, spartan room, lit by a squiggly bulb.

The next morning, Lai learned that the patient's name was John. She wrote that his condition had worsened.

As much as I could, I stuck around, rubbed his back and squeezed his shoulders to convey the message that he was not alone. I had felt the need for human touch and kindness when I was sick. I could not imagine the profound loneliness and tremendous fear this man had to face by himself — to fight for his life without any of his family members by his side, in a totally alien place. I wished we had morphine or IV valium to ease his feeling of air hunger and anxiety. But there are no such medications here currently.

In the afternoon, we learned that John passed away. His Ebola sample still sat in the fridge, missed by the morning delivery. He was 42 years old.

The life of the first patient I helped into the Suspected Ward of the ETU was snuffed out forever by the deadly Ebola virus, gone from the surface of this earth. In his dying hours, he was all alone.


Lai wrote often about how painful and humiliating her patients found the symptoms of Ebola — the constant vomiting and diarrhea. But she described several patients who were determined to keep themselves presentable. There was a father named Joseph: "Before he died, he requested a shower. He wanted to be clean when he left this world." Then there was "tall and elegant Nancy, who always kept her hair neat in corn rows."

Lai says that because the patients soiled their clothes pretty much every day, they had to wear a hodgepodge of donated items. But Nancy somehow still managed to put together outfits that looked good on her.

Then one morning, Lai wrote that she went to check on Nancy. This was the scene that greeted her:

We found Nancy hunched over her bed, face lowered in her arms, sitting on the bucket commode naked, except for her underwear. She had been weak but managed to haul herself to the commode during the night. But when we touched her, she was already in rigor mortis; she expired while sitting on the bucket.


Lai tried hard to keep her emotions in check for the sake of her patients. And she mostly succeeded. Until the day she had to tell a mother named Fatu that her daughter had passed:

Fatu's 3-year-old, Theresa, died this morning, curled up in bed, her face puffy beyond recognition. All morning long Fatu, lying in the next bed, did not realize her child was dead. Struggling with bloody diarrhea and profound weakness, she barely could take care of herself.

At the end of our morning round, we approached her with the psychosocial nurse to let her know that her daughter had died. At first there was disbelief in her eyes. Then despair. She fleetingly glanced at her daughter in the next bed. Confirming the truth, she was overtaken with grief. Her face dissolved into expressions of pain and deep sorrow. But she shed no tears. We gently asked whether she wanted to touch her child. She shook her head.

Seeing Fatu struggling with her loss, for the first time since I came here, tears filled my eyes. Grateful that no one could see my tears behind my goggles, they just innocently mingled with my sweat.


For all the gloom, Lai wrote about several moments of sudden light, when she was able to help a patient recover. Probably the most surprising survivor was a 6-year-old named Christine. Here's how Lai first met her:

Walking into the first room of the Confirmed Ward for the first time two days ago, we found 8-year-old Ryan lying on his side, neck extended and face uplifted. My partner felt a pulse, but it was only his own heartbeat. Ryan's chest remained still, no brachial pulse. On the hard cement floor was Ryan's 6-year-old sister Christine, curled up sleeping. She shared a bed with her brother. No one knew whether she crawled out of bed out of distress while her brother struggled and breathed his last. She was picked up, pants soaking wet with watery stool. If there were a time when children needed their parents most, this would be one of them.

For more than two weeks, Christine seemed close to death. Then, to Lai's delight, the girl started to get better. Here's Lai's last entry about Christine:

Nov. 8. It is a joyous day for Christine. Today she is finally going home. She sat on the white plastic chair, attending the devotional service, still with deep lines of sorrow carved onto her young face — an old woman before her time. In her short life, time has been tough and tragic for her; she lost her mother and brother. She has been in the ETU almost as long as I have been in Liberia and has won over many hearts. She managed a little sad smile this morning when I held her for the last time.

Lai says this was the only time she was able to get Christine to smile: "I said to her, 'Do you want to go home?' And then she smiled."

Soon Lai was on her way home too — back to Boston, where she is an infectious disease specialist at Beth Israel Deaconess Medical Center. But she has just returned to West Africa, this time to an Ebola treatment unit in Sierra Leone. She starts her first shift this week.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.

Transcript

RENEE MONTAGNE, HOST:

One indication that the Ebola epidemic in West Africa is waning, at least for now, the U.S. is bringing home nearly all the troops sent there to build treatment centers. Still, the battle goes on against that Ebola outbreak. And NPR's Nurith Aizenman has helped cover the epidemic for us. She's brought our attention also to an extraordinary blog. It was written by an American doctor named Kwan Kew Lai. Starting last October, Dr. Lai wrote almost every day of the six weeks she worked at an Ebola treatment center in Liberia. Nurith joined us in the studio to tell us more about it. Good morning.

NURITH AIZENMAN, BYLINE: Good morning, Renee.

MONTAGNE: You have, in fact, reported from Liberia. You've also reported from Sierra Leone. What made Dr. Lai's accounts stand out for you?

AIZENMAN: Well, Renee, one of the things that's so different about this epidemic is that we've had this strange and incredibly grim new type of place that's emerged over the past year, the Ebola treatment center. They're these isolated, self-contained worlds that we couldn't really see into, where you have this stream of people coming in extremely sick. And in the space of a week, they either live or they die. And frankly, most of them die. And even having visited some of these centers myself, I don't think I could truly grasp what it's been like in there until I read Lai's blog.

MONTAGNE: And what do you know of why Dr. Lai began writing this blog? Was it helping her, in some way, to process what she was seeing?

AIZENMAN: Yeah, I think it did. Lai's an infectious disease specialist. She works at one of Harvard's teaching hospitals in Boston. And she's volunteered in a lot of disasters, the earthquake in Haiti, the war in Libya. And she's blogged about a lot of them. But she wrote that she'd never seen anything like what she saw in West Africa - in this time of modern medicine, to be surrounded by so much death and to be so powerless in the face of it.

MONTAGNE: All right. What we have next, then, is an audio documentary that you put together based on Dr. Lai's writings. But I would like to warn listeners; it is quite graphic in parts. Here's Nurith again, picking up with Dr. Lai's first day at the center.

(SOUNDBITE OF DOCUMENTARY, "THE EBOLA DIARIES: A DOCTOR OPENS HER HEART, JOURNAL")

AIZENMAN: Lai started her shift at 6:45 a.m. The sun was just peeking over the jungle canopy. She's 64, petite. And on that day, she wrote in her blog that just putting on the protective gear was a struggle.

KWAN KEW LAI: The goggles given to me pinched my nostrils, making breathing difficult. Soon, it fogged up, making me feel like I was under water, snorkeling. I gazed at my surroundings through a thick haze. (Laughter) I think the first five minutes, I told myself, could I really do it? I was really sweating bullets. My brow was sweating. My face is sweaty.

AIZENMAN: But Lai says the worst part about the protective equipment - it's called PPE for short - was the barrier is created between her and her very first patient. His name was John. He was 42 and waiting in the triage area when Lai approached. She described his reaction.

LAI: He was absolutely petrified at the site of us in our full PPE. With the dark, ominous rain clouds hanging very low in the sky, we must look like hovering specters of ghosts. For him in particular, I felt that he really needed something from us. And as much as I could, I felt like I needed to give him that sense of closeness and touch.

AIZENMAN: But with the hazmat suit on, that was impossible.

LAI: As much as I could, I stuck around, rub his back and squeeze his shoulders to convey the message that he was not alone. I could not imagine the profound loneliness and tremendous fear that this man had to face by himself.

AIZENMAN: A few hours later, John died. Lai says his last moments were agonizing. The symptoms of Ebola are a torment. Lai says her patients vomited constantly. Their diarrhea was so continuous they were given buckets to use in place of toilets. Yet, many of them still tried to keep themselves presentable, to hold on to some dignity. Lai wrote about this one woman named Nancy. She was tall and stylish.

And you were saying she wore her hair in...

LAI: Always in cornrows and then with hair extension - brown with black - and neat and tidy.

AIZENMAN: The patients ruin their clothing pretty much every day. So they had to wear a hodgepodge of donated items. But Nancy...

LAI: She managed to find things that she could look good in. And she looked good every day.

AIZENMAN: But one morning, when Lai went to check on Nancy, this was the scene that greeted her.

LAI: October 27, we found Nancy hunched over, sitting on the bucket commode, naked except for her underwear. She had been weak, but managed to haul herself to the commode during the night. When we touched her, she was already in rigor mortis.

To have her die in that state, in such a horrible, unladylike way, was not Nancy - just not Nancy.

AIZENMAN: Lai says never in her career had she been able to do so little for her patients. She didn't even have morphine for their pain. But she wrote that she did at least try to stay professional, to keep it together for them. Then came the day she had to tell a mother that her 3-year-old daughter had died. The woman's name was Fatu, and she was lying next to her child. But Fatu was so sick herself, she hadn't realized the girl had passed.

LAI: At first, there was disbelief in her eyes. She fleetingly glanced at her daughter in the next bed. Confirming the truth, her face dissolved into pain and deep sorrow. But she shed no tears. Seeing Fatu struggling with her loss, for the first time since I came here, tears filled my eyes. Grateful that no one could see my tears behind my goggles, they just innocently intermingled with my sweat.

It's funny, isn't it? I don't know why she did not cry. She just - you know, her face just broke into this awful, contorted expression of pain. But it's really strange. Here I was, crying for her.

AIZENMAN: Fatu didn't have long to mourn. The very next day, early in the afternoon, she died too. Days turned into weeks.

LAI: October 27, there are now 42 patients buried in the cemetery.

AIZENMAN: And Lai filled her blog with more stories of unbelievable sadness.

LAI: October 29, Aaron, droning and screaming...

November 1, Patience was quite confused...

November 19th, 5-year-old Beyan, cared for lovingly by his papa...

AIZENMAN: One afternoon, she sat down on the back steps of one of the treatment tents to have a quiet moment. Suddenly, a three-foot snake slithered past. A gravedigger who was working nearby ran after it, a stick in his hand. Lai shouted for him to stop.

LAI: Don't kill it. Let it go, I said. It disappeared into the thicket of cassava bushes even before he could reach it. He asked, why don't you want me to kill it? I can eat it. I didn't want to say that death has been so pervasive here; it would be good to spare a life. Instead, I said that the snake might turn around and bite him.

AIZENMAN: She felt embarrassed standing up for a snake. But she had seen enough death. Still, Lai was able to help some patients recover, like a 6-year-old named Christine. When Lai first met her, she was lying on the floor. She had been sharing a cot with her older brother. But she'd crawled out sometime in the night when he died. For days, Lai worried Christine would die too.

LAI: October 24, I asked her whether she missed her mommy. She nodded. October 26, refusing to eat and drink, seemingly giving up her fight.

AIZENMAN: But one morning, Christine started to get better.

LAI: Today, Christine was eating a piece of chicken.

(Laughter). She's eating a piece of chicken (laughter). I was like, a victory.

AIZENMAN: She grew stronger by the day. Finally, she was ready to be released. Lai marked the occasion by posting a photograph of herself holding the girl in her arms.

LAI: And she's so cute in that photo. She's just - she's got just a sad smile on her face. Oh, she didn't smile at all. That was the only time that I was able to make her smile. She was so sad. Her eyes looked as though she had gone through so much.

AIZENMAN: How did you get her to smile?

LAI: (Laughter). I said to her, do you want to go home? And then, she smiled.

AIZENMAN: Soon, Lai was heading home too, back to Massachusetts.

When you got off of the plane and arrived back home, how were you different than the person, the Kwan Kew, who left?

LAI: It make me a little bit more sober, that such things could happen to people. You know, you never came so close to death so many days of your life.

AIZENMAN: And this is what's made the Ebola epidemic so unlike anything Lai's seen before - to have all these patients come through, to meet them, to get a sense of who they are as people, and then to watch helplessly as their lives were snuffed out.

LAI: I've gone through something, a place that only a few of us have gone through. Now you came back; you understood more of what life is all about. I'm not sure whether it makes me a better person. But it make me feel like I understand a lot more about human sufferings.

AIZENMAN: Dr. Kwan Lew Lai has just returned to West Africa, this time to an Ebola treatment center in Sierra Leone. She starts her first shift this week. Nurith Aizenman, NPR News. Transcript provided by NPR, Copyright NPR.