"I Can Still Be a Mother"
Her limbs gone but her heart strong, Monica Sprague begins the long road back to the life she knew, driven by the desire to be there for the husband who stood by her and the daughters who need her.
THE NURSES CHANGING the dressings on Monica Sprague's arms and legs a few times a day developed a unique routine. Most important was shielding Monica from seeing her own limbs - so they would distract her, ask her to close her eyes, or simply stand in her line of sight. And then they would slowly unwrap the cream-colored gauze slick with Vaseline from the tips of her fingers all the way up past her elbows and from the tips of her toes up past her knees. The limbs were dead, all black and shriveled, hard for anyone to look at, never mind the person whose own body they were attached to, and so once the bandages were off, a fresh coat of Vaseline was applied and fresh gauze delicately wrapped on.
"Her hands were the most horrendous I'd ever seen," says Kate Davignon, one of the nurses in MGH's surgical ICU who helped change Monica's bandages. "Her fingers were the size of a child's. They were all shriveled, small and thin. They were black through and through, the nails and the skin."
The nurses were successful at protecting Monica from seeing her wounds, until one day when she stopped Davignon.
"I want to see," Monica said.
It was early in September 2007. Barely one month ago, Monica had given birth to a beautiful daughter, her second, and had been so close to going home healthy to her apartment in Ayer and starting her new life with her fiance, Tony Jorge, their newborn, Sofia Maria, and Madalyn, her bubbly and precocious 9-year-old from her first marriage. But that all seemed so long ago. Now Monica, a passionate, spry, and outgoing 35-year-old woman with a perpetual smile, was slowly accepting the hard truth that a rare and mysterious flesh-eating bacteria had nearly killed her in the hours and days after her delivery at Emerson Hospital in Concord and that she was alive only because of the fast and aggressive care she got from trauma surgeons at Mass. General.
But even they were not miracle workers. The bacteria were gone from her body, but not before doing irreparable and devastating damage. The only way she was going to live, the only way she was ever going home again was if she let doctors amputate both her arms and both her legs. Those surgeries were now days away, and Davignon, all of 28 and an MGH nurse for five years, had hoped to make it to the operations without Monica ever glimpsing her dead limbs. But Monica had insisted.
"Well, they're really pretty bad," Davignon replied when Monica said she wanted to look. "I'm not sure if you want to see."
"No, I want to see. I want to know what I have to work with."
And so Davignon slowly undid the gauze on the left hand, showing Monica the back of her hand first, because it was the least damaged and because her black fingers were hidden, curled beneath the hand. But Monica realized that Davignon was being kind. The hand was like glass, hard to the touch, and the dead skin stretched up her forearm.
"Turn it around," Monica said.
Monica glanced at the fingers, and Davignon saw a look of shock come over her face.
"I'm trying to move them," Monica said, "and I can't."
And that's when she knew. She had no choice. When her surgeon, Marc de Moya, came to check on her, she told him "I just want to get this over with."
A few days before the surgeries, Tony went to the hospital with Sofia and Madalyn, and they all crammed into her small room. Amy Brennan, a registered nurse with three kids of her own who'd grown close to Monica, gave Madalyn some crayons to play with. But at one point, Monica blurted out to Madalyn: "You know, they are going to take my hands." Brennan cleared everyone else from the room, leaving mother and daughter alone. A few minutes later, Madalyn came out and went straight to Brennan.
"She would die if they don't take her arms, right?" Madalyn said.
"Yes, that's right," the nurse told her.
On September 7, 2007, de Moya amputated Monica's legs below the knees. Four days later, Monica had a relaxing "spa" day at the hospital with Davignon. The sweet nurse conditioned her hair, massaged her shoulders and scalp, and talked to her about how strong Madalyn was. Then David Ring, an orthopedic surgeon, took her away and cut off her arms below the elbows.
REBECCA MURPHY, A SHORT and sassy middle-aged blonde from Brooklyn who wears colorful eyeliner and chunky, stylish jewelry, has been a clinical social worker with intensive care patients at MGH for a decade. "I can sit with patients at their most vulnerable times and allow them to express themselves," Murphy says. "I assist them in their journey." After seeing Monica up close in the ICU in late August, however, Murphy didn't expect her journey to last very long. "I thought she'd die."
Instead, on September 16, Murphy found herself helping Monica move from the ICU to the seventh floor, a fast-paced wing known as Ellison 7, with 36 beds and a staff of young, energetic therapists, where post-surgery patients begin their physical rehabilitation. It was here that Monica's shocking story began to circulate in the hospital hallways. Some who only knew her as "that pregnant woman who had the flesh-eating disease" assumed she had died when they hadn't heard about her for weeks. Now they learned that not only was she alive but that she was, only six weeks later, beginning her recovery, minus her arms and legs. On the day Monica moved up to Ellison 7, Roberta Dee, a case manager who helps patients line up their insurance, remembers the ICU nurse telling her that this was "the sickest patient to ever come out of the ICU and survive."
As Murphy, Dee, and others in Ellison 7 got to know Monica, they found themselves nervously anticipating the inevitable, hysterical "Why me?" meltdown from the mother of two. But it never came. What they encountered was a determined and surprisingly cheerful woman who loved her apple juice and oatmeal and who, even in her groggiest, most medicated state, even when her surgically induced menopause reduced her to a puddle of sweat and tears, would point with her amputated arm to the bedside picture of her two daughters as her motivation to keep going. "We were all pushing for her," one of her nurses, Vilma Pacheco, recalls. "But if the patient doesn't want to do it, it's like pushing a boulder uphill."
Monica needed little pushing. Each day, her exercises grew more intense: reaching forward across her body with her arms to improve her range of motion; strengthening her core as much as possible, given that her abdominal muscles had been surgically removed; and learning to sip from a cup, feed herself, and even sign papers (like the consent form she signed with an "X" to agree to this story).
By the end of the month, Monica was making her goals clear to anyone within earshot. On September 27, she told Rebecca Murphy she wanted to change from Monica Sprague to Monica Sprague Jorge, to take the name of the man who gave her Sofia and who was there when she opened her eyes after all those surgeries.
And once that was done, she wanted to go home, to be with Tony, Madalyn, and Sofia. "I can still be a mother," she told Murphy. "I may not have my limbs, but I can still be a care provider for them emotionally. I went in to have a baby. I am going to go home."
And so Murphy set out to throw her patient the perfect wedding.
And her patient set out to get herself home.
TONY AND MONICA SETTLED ON OCTOBER 5 for their wedding because it was a Friday and Tony didn't work, so he could get Madalyn out of school. For Tony, the wedding was finally a reason to smile after so much anguish. No one can know how he'll react if a loved one becomes incapacitated. And even though Monica had just had their baby, the couple weren't married. If Tony had wanted to run, supporting Sofia financially from a safe distance, he could have. He was 40, and with two broken marriages behind him, this was definitely not the life he'd signed up for when he proposed to Monica almost a year earlier. But the thought of bailing was never an option. "If she lost her limbs, I just wanted her," he says one evening between drags on a cigarette while sitting in their apartment. "We could work through that. It's not a great choice, but loss of limbs or loss of life - it's no choice. I was committed to her. We weren't married, but emotionally we were. It was never an option to tuck tail and run." In fact, his biggest fear was that she'd be angry with him for not letting her die rather than having to go on living without arms or legs. "I had a lot of nightmares when I slept," he says of those fears.
He didn't have to worry. When he had said Monica was strong that night in the ICU when she nearly died, he had no idea how strong.
Like any woman, Monica wanted her wedding to be perfect. For her and Tony, the hospital that saved her life now seemed like the perfect place to do it. She told Murphy she wanted a small, nondenominational ceremony, and with Monica's mother gone, Murphy filled the role of wedding planner, right down to the last details. She reserved the hospital's chapel and arranged for the oncology chaplain, Katrina Scott, to officiate. Monica wanted to say "I do" in something other than an ugly hospital bed, so Murphy got a stretcher chair that could be decorated with blue ribbons and allow Monica to sit upright. Monica's friend Susan O'Connell bought the flowers, and Monica's sister, Patricia Cotter, handled dress duties, finding a pretty baby-blue silk V-neck number that she had specially tailored.
"We went to her room and talked about the wedding cake, the food," Murphy says. "She was really getting excited. I was doing something for the first time that gave her pleasure."
There was only one problem. Photos. Monica didn't want them. As beautiful as the wedding might be, it could never be what she'd imagined for herself and Tony. Murphy understood, but she reminded her how special the pictures would be years later. Monica relented, and on the afternoon of October 5, the MGH chapel began filling up, first with the couple's closest friends and family members, then with the nurses and doctors who had cared for Monica in her two months at MGH. Monica had forgotten she needed somebody to walk her down the aisle, and so she asked a cousin of Tony's to do the honor. Tony was wearing a black suit and blue tie. Madalyn, in a light-blue dress like her mom's, stood next to Monica, while Sofia sucked on a pacifier in her car seat. There was not a dry eye in the chapel. "We were just so happy," Monica says of that day. "We were a family."
SITTING ON THE EDGE OF HER BED, Monica dangles her legs over the side. She looks pretty in her bright-blue sleeveless top and oval glasses, her hair pulled back tight in a ponytail. It's 2:15 p.m. on Friday, November 2, and it's time to learn to walk.
The beige and white hallways at Spaulding Rehabilitation Hospital, a 10-story red-brick building behind North Station, are traffic jams of doctors, nurses, and therapists, and patients in wheelchairs, with third-degree burns, reconstructed knees, colostomy bags on their hips, prosthetic limbs, or sometimes just missing limbs. It's a tough place to smile, and yet Monica wears one wherever she goes, greeting every patient and doctor and therapist she sees with a cheery "Hello" or "Good morning."
Black-silicone liner sleeves cover the ends of Monica's shortened arms and legs. Red streaks are visible on her thighs, fading scars from where doctors took multiple skin grafts to repair her abdomen after almost three dozen surgeries.
"I remember being told I'm going to have not one, not two, but four amputations," she says, while her physical therapist, Danielle Bressoud, reaches down into a closet in Monica's room. "You don't react at first. At first you don't believe it. But then when they undo the dressings and you see it, you realize it."
Bressoud pops up, holding Monica's newly arrived prosthetic legs. The day before had been the first time Monica stood up in them. Today, she's going to walk in them.
The prosthetics business has been booming, thanks to the war, but most patients Arthur Graham of Next Step Orthotics and Prosthetics works with have lost one limb or two, very rarely four. The legs and arms his company provided her are made from a combination of silicone, plastic, and titanium, with the legs having carbon epoxy feet and the arms lightweight aluminum hooks. The legs weigh about 3 1/2 pounds apiece, the arms, which include a wrist that can rotate and be used for five different functions, about half that. Under a new state law, insurance will cover virtually all of the expenses for Monica's limbs - a good thing, considering her legs cost about $8,000 apiece and her arms $6,000 each. "I absolutely see the day she'll be able to walk independently," says Graham, who runs the New Hampshire-based company's Newton office. "Maybe with a cane or nothing at all."
But right now, she needs help, so her wheelchair is placed next to her bed, and she slides into it. Monica reaches forward with her right arm and, using the end of her stump, pushes forward on the lever; the chair lurches ahead. She steers around the corner to the elevator and takes it one floor down, to a bright gym, where there's a treadmill, parallel bars, a stationary bike, steps, and an assortment of light weights. The enormous windows look down on the spot where Duck Boats splash into the Charles River.
The prosthetic legs need shoes on the feet, and Monica doesn't have any. So another therapist in the room lends her white-and-orange Asics sneakers to Bressoud, who slips them on the legs and ties the laces. Bressoud puts the legs under Monica's thighs, and Monica leans forward in the chair, slipping her right leg into the plastic casing at the top of the prosthesis. It clicks in, but the left one is more stubborn. Monica grimaces as she pushes down, determined to get it all the way past the knee. Seconds turn to minutes, until finally: Click, click, click. She's in.
Bressoud wheels the chair between the two parallel bars, where Cara Brickley, her therapist supervisor, rolls up a white sheet and slips it like a rope under Monica's butt.
"One, two, three," Brickley counts, and then she pulls the sheet up while Monica pushes herself off with a low grunt. And, suddenly, she's standing. Except it hurts. Her left leg still isn't right. Monica sits, and they adjust it once more. Better. She stands up again, and with one therapist behind her, and another in front, Monica takes her first step. Each one is slow, the foot barely lifting off the ground. Monica's elbows rest on the parallel bars for balance. Six steps later, she's at the end of the bars.
"That was terrific," Brickley tells her. "That was excellent."
Monica is standing there when Tony walks through the door, pushing Sofia in a stroller. He walks straight to his wife and kisses her three times on the lips. Monica's soft smile turns to a beaming grin as she strains to lean to one side and catch a glimpse of her sleeping baby. Tony can't stay. He's only in town briefly to fill out some paperwork at MGH. But seeing Monica standing for the first time suddenly has him smiling as broadly as she is.
"Happy?" Monica asks him.
"Yeah!" he says.
Tony and Sofia leave, and Brickley asks Monica if she wants to keep going.
"A little more," Monica says.
She wheels herself into the hallway, where a walker is placed in front of her chair and a third physical therapist arrives. The sheet slides under Monica, she stands and leans forward on the walker, and she's off. These steps are more confident, more steady. Five feet. Ten feet. She walks 15 feet before everyone decides it's enough for the day.
Sitting down again, she's sweating but smiling.
"I'm happy. Very happy."
Asked why she didn't stop with her first steps, back in the gym, Monica doesn't hesitate. "My daughters are my goal to keep pushing."
But not every day would be so upbeat. Three weeks later, on a frigid, windy afternoon in late November, Monica struggles with her new arms. Swelling is making it challenging to put them on, and after almost 15 minutes, she's frustrated. Finally, they're ready, and she begins working with a baby doll the therapists call Ruben, trying to put the pants on, only to come to a realization. She says through tears: "There's going to be some things I can do and some things I can't do."
BEFORE HER TRAUMA, Monica had custody of Madalyn, and her ex-husband had her every other weekend. When Monica was hospitalized, a court reversed their roles, giving her ex-husband custody, to maintain a stable environment for Madalyn. But for Monica, it made for painfully long stretches without seeing her whole family together.
It happens on December 8, when Tony, Sofia, Madalyn, Tony's mom, Adelaide, and Tony's sister, Tina, come together. They gather in a bright room at the end of the fifth-floor hallway, where a college football game blares on the TV and the windows look out on the Zakim Bridge and the Museum of Science. Monica, in a Red Sox championship T-shirt, is not wearing her legs, but she does have her prosthetic arms on. She can put them on by herself, swinging them over her shoulders, like putting on a jacket. Each has a hook at the end that she opens by stretching her arm out, which tightens the tension wire around her back that pulls open the claw.
Madalyn, who would turn 10 in February, is a bundle of energy in her glasses, jeans, and green-and-pink "Bubble Yum" T-shirt, alternately holding Sofia on her lap, hugging Monica from behind, and blowing through the room like a hurricane. When she finally sits still, she admits she thought her mother was going to die. "I was sad and scared," she says. Then she pauses and grins, looking at Monica. "Bad story turned good." Before running off, she adds, "It's cool to be a big sister."
Sofia, whose blue eyes look like Monica's and whose hair has turned a lighter brown in four months, is crying. Tony kisses her forehead. He places Sofia, in her pink onesie, on a pillow on Monica's lap, but Monica tenses up. She's worried her claws will feel cold on Sofia's skin or maybe scratch her.
"It's OK, honey," Tony reassures her. He props Sofia against Monica's chest and places a bottle of milk inside her right claw. Monica coos at Sofia, twists her prosthetic arm, and places the bottle in her baby's mouth. And there is quiet.
DID YOU HAVE A GOOD DAY? Maybe did some yoga or took a jog, stirred up some oatmeal for breakfast, slipped into your favorite slacks, had a productive meeting at work, cracked up at a stupid cat video a friend e-mailed you, watched Meredith and McSteamy heat up the sheets, then read your novel before crashing. So now imagine that the highlight of your entire day is brushing your teeth. That's it. Squeezing out a drop of toothpaste, lifting the brush to your mouth, and gently rubbing it back and forth until you feel that clean on your tongue. And that makes you want to get up tomorrow and try brushing your hair.
For Monica, every task is precious now. Answering the telephone. Bathing. Spooning up cereal. Just opening her eyes to see sunlight beaming into her room is something to savor. How could it not be, when only a few months ago, she was lying in a hospital, brought back from the dead.
On Saturday, December 15, more than four months after she gave birth at Emerson Hospital, and two months after she got married in the MGH chapel, Monica gets her second wish. Tony picks her up at Spaulding, helps her into their gold Kia Rondo with the Patriots sticker on the side window, and drives his wife the hour-ride home to Ayer. When he pulls into their sloped driveway, he gets the wheelchair and the walker out of the back and goes around to her side.
"I will not be wheeled in," Monica says firmly to no one in particular as he opens her door. "I am walking into my home." Tony doesn't argue. He brings her the walker, and on a 20-degree morning with snow and ice and salt on the driveway, Monica swings her prosthetic legs out of the car, puts her sneakers on the ground, pushes herself up, leans on her walker with its two small, front wheels, and shuffles her way around the rear of the car, up the board that Tony has placed over the single step, and into their cozy apartment.
"Welcome home, honey," Tony says while standing next to her in the foyer.
Tony's mother, who cared for Sofia while Tony went back to work, is waiting for Monica in the kitchen and gives her a long, tearful embrace, whispering, "You're home, you're home." Ken O'Connell, the husband of Susan who first introduced Monica and Tony, is there with his kids, along with a few other friends and relatives. When Ken's exuberant son, Cameron, sees Monica, he just says, "I like your new arms." Monica smiles, but someone is missing. She can't hide her sadness that Madalyn is absent. Her ex has her for the weekend.
Even though she's home, Monica's journey is far from over. Her friends at TJX have left her desk untouched and are holding a job for her if she wants to return one day. Insurance is covering virtually all of her medical bills, but, inevitably, her new life will be more costly. (Tony had to widen their bathroom door and install a new sink to fit her wheelchair.) She's going to court in a few weeks to regain physical custody of Madalyn (she would get it on January 8). But for now, Monica just wants to be a mom again, though she still hopes that one day she'll learn what triggered her ordeal.
Six months after she gave birth, after an internal investigation by Emerson officials and follow-up questions from the state Department of Public Health, what is known is this: Emerson studied its care of Monica from the medical staff to the nurses to the pharmacy to her medications, and took cultures on any person who came in contact with Monica, and swabbed and cultured surfaces and medical equipment around the units where she was kept. It found no trace of the deadly bacteria. "We had an isolated case; we did not have an outbreak," Greg Martin, the hospital's chief medical officer, said in an interview last month, while refusing to talk specifically about the care provided to Monica because of patient confidentiality. "I am confident we did a thorough evaluation of the episode and did not find any policies and procedures we need to change." He said Emerson not only found no sign of the bacteria, it did not discover a source by which they might have entered her body. So how, then, did Monica get the bacteria? Did Emerson miss something? Did she unknowingly have them on her skin when she walked into the hospital that morning? She has hired a lawyer steeped in medical malpractice cases to help her review her legal options, but it's possible she may never get the answers she wants.
For now, what is certain is that Monica will have to take estrogen for the rest of her life and maybe rely on a colostomy bag permanently as well. She needs help putting the liner sleeves on her arms and legs, but she can put her prosthetic limbs on herself. Tony's cousin will help her during the days, but getting around will be slow for the time being, whether in the chair or on her legs. Just taking a few steps is exhausting. But for now, on this cold, winter day 10 days before Christmas, Monica is content to live not in the scary past or uncertain future, but in the joyous present.
"I have days when I say, 'Why couldn't you leave me one limb!' " she says, laughing. "But then I see my girls and realize, 'Well, I'm still here.'"
It's almost lunchtime. An orchestration of video-game beeps and loud bangs comes from the other room, where the kids are playing. A spread of meatballs and cold cuts and cookies is waiting on the dining room table, along with a "Welcome Home" cake. Monica sits back down in the wheelchair, and Tony pushes her through the kitchen and dining room toward the living room, where he has hung the family stockings and set up their annual Christmas village of tiny buildings and people ice skating.
But first, Monica directs him to a door off to the right, into the nursery. Sofia is lying on her back, transfixed by the colorful mobile dangling above her. Monica, who is wearing her engagement and wedding rings on a necklace, leans forward in her wheelchair and, on her new legs, with a slight grimace, stands up and leans over the crib next to Tony. She reaches out with her new right arm and tickles her daughter until they all laugh.
Doug Most is editor of the Globe Magazine. E-mail him at firstname.lastname@example.org.