Staff writer Cindy Rich can be reached at crich@washingtonian.com.
Sometimes when she's crying or sitting in her highchair watching Barney, Erin puts her hand over her heart. Her heartbeat soothes her.
For her first four months, doctors didn't know whether Erin's heart would beat on its own–or whether her twin sister Jade's would either. The girls were born joined from chest to navel. Their hearts beat in sync.
Now, with her heart tucked just beneath the surface of her skin, Erin sings "Ring Around the Rosie" with Jade and their older sister, Taylor. She pulls baby wipes from a box and throws them.
Erin likes to ride in her little red car. She has to push the wheels–the car is helping prepare her for a wheelchair. "Ride, ride!" she'll say. Sometimes Jade tries to get in with her. Whatever one of them has, the other wants.
When Erin dances, she lays both arms on the carpet and bounces in place. She's too young to understand why she can't dance the way Jade does. She doesn't know that the same surgery that saved their lives left her partially paralyzed.
Doctors can't tell her mother, Melissa, and father, Kevin, the chances that Erin may walk one day. But odds don't mean much to Melissa anymore. She has two little girls who aren't supposed to be here.
Before her third ultrasound test, Melissa Buckles knew little about conjoined twins. She knew they'd been called Siamese twins. She'd heard they'd been exploited in circuses. She thought there was a stigma.
Melissa, a high-school teacher, and Kevin, a Marine gunnery sergeant, had been married four months when an ultrasound technician told them about their daughters' condition. About one in 50,000 conceptions is a set of conjoined twins, likely a result of a fertilized egg that splits into two embryos but doesn't fully divide. One in 200,000 of those pairs makes it to birth. Most don't live past their first day.
The Northern Virginia couple didn't buy baby clothes because they didn't know if they'd ever meet their daughters. Melissa spent two months in the hospital before an emergency delivery. Then she and Kevin had to teach themselves to care for two babies they couldn't cradle.
When the girls were four months old, their parents waited in a playroom at Children's National Medical Center in DC while doctors performed a six-hour operation to allow Erin and Jade to lead separate lives.
Melissa had always wanted twins, but she thought they had to run in the family. When she was pregnant with their first daughter, Taylor, she hadn't started showing until she was six months along. This time she was bigger much sooner.
"If you really loved me," Kevin joked, "you'd have twins."
Melissa, then 30, was 18 weeks pregnant when she and Kevin went to DeWitt Army Community Hospital in Fort Belvoir, eager to find out if she was having a boy or a girl.
The technician put the wand on Melissa's abdomen and asked, "Does either of you have twins in the family?" They said no. Then Melissa looked at the screen. Was she seeing two heads, or was the technician moving the wand around?
"Am I carrying twins?" she asked.
The technician kept scanning.
"Seriously–am I having twins?"
The technician pointed to the screen: "There's one head. There's the other." Melissa's heart raced, and she started laughing.
"Are you Christians?" the technician asked.
Melissa's throat closed, and she grabbed Kevin's hand. "Why?" she asked.
Melissa called her mother in Minnesota on the way home to Woodbridge. She and her mom talked nearly every day.
Her mother laughed when Melissa told her she was having twins. "But Mom," she said, "there's a problem. They're conjoined."
Melissa got home and turned on the computer. The technician at the army hospital had told her that the girls appeared to share a liver, possibly a diaphragm. Melissa read that the liver is the only organ that regenerates. She learned about Eng and Chang Bunker, twins from Siam who were connected at the chest. She saw pictures of babies who shared limbs, and read about the death rates.
I may never get to hold them, Melissa thought. I may never see them alive.
Kevin turned off the computer and said, "Let's wait before we get upset about something we don't know."
A few minutes after Kevin met Dr. Christian Macedonia in the National Naval Medical Center's prenatal assessment center in Bethesda, they had an understanding.
"If you don't think they're going to make it," Kevin said, "tell us."
It was November 2003, the day after the young couple had learned about the twins.
Kevin owned a copy of Henry Gray's Anatomy of the Human Body and liked researching medical issues. A competitive swimmer, Melissa was versed in how the muscles worked. She'd been a premed student for a year of college. They wanted to hear every detail.
"I'll give it to you straight," Dr. Macedonia told them. As a perinatologist, he'd had a few patients who were pregnant with conjoined twins, but their babies hadn't survived to birth. "When I'm scanning, I don't do a lot of talking; just let me look."
Macedonia studied a volumetric sonogram–a three-dimensional image–and saw that the twins were joined from mid-chest to navel. The liver seemed to be the only major organ system they shared.
"Baby A's heart is in baby B's chest," he said. The twins appeared to have separate cardiovascular systems. If their hearts weren't connected, they would have a much better chance at survival.
Macedonia showed Kevin and Melissa the image of their babies from head to toe. The babies elbowed each other. One looked over the other's shoulder. Macedonia called them dance partners.
"The only thing I can see that's different is they're conjoined," he said. "Everything else looks normal."
He told Kevin and Melissa they could map out a plan for delivery or explore termination options. They didn't want to end the pregnancy.
If one of the twins got sick, Dr. Macedonia told them, they might have to make hard decisions.
"I read on the Internet that most don't make it," Melissa said.
That's true, Macedonia told her, but some pregnancies are terminated and some of those babies had additional health problems. Because the girls had survived 18 weeks and because conjoined twins connected at the liver have the best outcomes, Macedonia gave them an 80-percent chance of making it to birth.
Melissa would need to carry the twins for at least 32 weeks–"because it's so rare and we don't know a lot," Macedonia said. "I just want you to take it as easy as possible."
She went back to Forest Park High School in Woodbridge, where she taught English, to get ready for a substitute.
Melissa kept her ultrasound pictures in a baby book. "Twins!" she wrote next to one. "Sharing secrets," she labeled another.
She wanted to name the girls in case something happened. Erin was one of the few names she and Kevin agreed on. They had chosen Jaden for a boy, so they decided to name their other daughter Jade.
They got a suggestion for the girls' middle names from Kevin's sister, Kimberly. When Kevin's mother called to tell her about the twins, Kimberly had said, "Faith and Hope are going to be fine."
Their names would be Jade Hope Buckles and Erin Faith Buckles.
Kevin and Melissa were at a doctor's appointment in Bethesda when Kevin noticed in an ultrasound photo that something appeared to be wrapped around Erin's neck.
"Is that the umbilical cord?" he asked.
Melissa was admitted to National Naval Medical Center that night, two days before Christmas. If something happened to the twins' shared umbilical cord, both could die. She would spend the remainder of her pregnancy–the girls were due in April–on hospital bed rest.
She and Kevin decided they each had a job: She'd deliver healthy babies; he'd keep the house running and make sure she got the best medical care. He'd bring her movies and Mexican food.
Melissa had her own room, where Taylor and Kevin Jr.–Kevin's 11-year-old son from his first marriage–opened presents on Christmas. Her parents came to Virginia and watched Taylor while Kevin went to work at the Marine Barracks, where he's the assistant drum major for the Drum and Bugle Corps. When Taylor visited, she'd lie in bed with Melissa and feel her sisters kicking.
Melissa sang "You Are My Sunshine" to Erin and Jade. She watched Babies: Special Delivery on Discovery Health. The infants on that show ended up okay. This can work, she told herself.
She asked Dr. Macedonia if she'd be able to see the girls right after she had them, before they went to intensive care.
It depends on how critical they are, he said. Melissa started to cry.
"I'm sorry," he said.
"No," she said, "it's not you."
The next day, Dr. Macedonia brought her a cake he'd decorated himself, with two baby feet and the words HANG 5. She had to get through five more weeks.
When Dr. Macedonia said, "We're delivering tomorrow," Melissa was terrified. She was 34 weeks pregnant, six weeks short of her due date, and having contractions. Macedonia suspected that the umbilical cord was being intermittently compressed; he didn't think it would hold up much longer.
The next day, Melissa felt weak on her way to the operating room for her cesarean section, passing signs that read HAPPY BIRTHDAY JADE AND ERIN.
She was lightheaded as nurses laid her on her back. An anesthesiologist started an epidural. She felt as though she were hyperventilating, and the oxygen mask made her claustrophobic.
After Dr. Macedonia did an ultrasound to see where they'd make the incision, a nurse put a fetal heart monitor on Melissa's abdomen and kept moving it around. "Can you hear their heart rates?" Melissa asked.
She'd heard the girls' hearts for months. Now doctors couldn't find their heartbeats.
Dr. Macedonia came over with an ultrasound probe. Melissa felt him moving the wand. He found that the girls' heart rates were dangerously low. "We have to go now!" he said.
The anesthesiologist told Macedonia to go ahead, but the epidural hadn't taken full effect. "We have to deliver your babies," Dr. Macedonia told Melissa.
She didn't try to stop him. We can't have made it this far to have something like this happen, she thought.
She said, "Just save my babies."
As doctors prepared for the emergency delivery, Melissa heard someone say, "Don't let the father in." A husband might get too protective when he saw his wife in that much pain. Kevin sat in the waiting room.
Dr. Stephen Morrow, a pediatric surgeon, sat by Melissa as surgery started. "Okay, they're cutting," he said. The babies were in breech position. "They've got the babies' feet now." Melissa dug her fingernails into her palms.
The girls were out a minute later. "Congratulations," Dr. Macedonia said. "They look wonderful."
Doctors took the girls to the warming table while Melissa waited to hear them cry. "Are they okay?" she asked. "Are they breathing?"
Kevin saw the twins first as Dr. Macedonia worked on Melissa's incision. Some doctors had worried that it would be hard for Kevin and Melissa to see their babies joined. But Kevin wasn't fazed. He'd seen the ultrasound photos.
Melissa kept passing out and waking up from a combination of pain and medications. "Check their fingers and toes," she told Kevin. Erin let out a little cry. A nurse brought the twins to see their mother.
"Hi, sweetie, I love you," Melissa said, touching one of their faces. She touched the other: "I love you." •
On the ride home a week later, Erin cried while Jade slept. Together, they weighed nine pounds, nine ounces.
It was early March, and Melissa hadn't been home since before Christmas. Their crib wasn't set up, and she needed two mobiles because the girls looked in different directions. The Marine Corps-Law Enforcement Foundation sent the couple on a shopping spree to Babies "R" Us.
The first time she had held Erin and Jade at the hospital, Melissa was scared she would hurt them. She didn't know how fragile the connection between them was. It took time to get used to it.
At home, she'd sit with one baby on each knee, holding their backs, so they could look around. She couldn't find a way to snuggle with them. Erin and Jade often had their arms around each other. Their faces were so close that it sometimes looked as though they were kissing. They held hands. Erin cried more than Jade and liked looking at things with wide eyes.
Melissa couldn't breastfeed, so she pumped milk and criss-crossed bottles to feed the girls at the same time. When she patted one twin on the back, the other would burp. She bought outfits that snapped so she could attach one girl's clothes to the other's. Changing diapers was sometimes an ordeal because the twins could lie only on their sides.
Melissa and Kevin wondered what feelings the girls shared. Was there an invisible line where feeling stopped for one and started for the other? If Melissa touched Erin on her back, could Jade feel it?
The girls slept in their parents' bedroom. They had to be turned every few hours so they didn't get sores. Their parents checked on them constantly. One twin often cried while the other slept. Melissa and Kevin had to risk waking one to comfort the other.
Taylor, then two, didn't think there was anything different about her sisters. She pulled a stool up to their crib every day and sang "Happy Birthday."
Melissa and Kevin hadn't known where to go for help when they found out about their conjoined twins. They couldn't find a book that would tell them what would happen. They contacted a support group but got no response.
This was the first real hardship they'd faced together. They'd met through friends in Arizona, where Melissa was teaching and Kevin was performing with the Marines. Taylor was born in October 2001; they moved to Woodbridge in June 2003 and married that July.
Just before the twins were born, they had to decide if they would talk to the media about the planned separation. Melissa understood why people would want to hear about her girls, but she and Kevin were hesitant. They didn't want anyone to exploit their daughters.
They decided that families in a similar situation shouldn't have to figure out things on their own. Going public might help.
They would be able to choose which TV network would have exclusive coverage of the surgery. Children's Hospital–where they had decided to have the girls' surgery–gave them a list of questions to ask when they met with producers.
Kevin added his own question: "What if one or both of the girls die? What do you do with the program?"
Most of the producers didn't have an answer. Someone from ABC said, "What do you want us to do?"
Kevin liked that response. If they were going to share the girls' story, they'd do it happy ending or not. He said, "I'd want you to air it."
Melissa was sitting on her bed holding her newborn girls when she suddenly felt scared to bond with them. How could she get close when she might lose them?
She was ashamed. Of course I can, she told herself; they're my babies.
Kevin saw her crying and reminded her of the decision they'd made. "Take one day at a time," he said.
They might be cramming a lifetime of loving the girls into days or months.
When Melissa was alone with Erin and Jade, she wondered how she would handle it if they didn't make it. She couldn't always talk to Kevin; he listened but didn't show his fears.
Kevin's father had left him and his mother and sisters when Kevin was seven and the family was living in New Orleans. Kevin had learned to keep things inside. In high school, he helped his mother, who worked two or three jobs, and tried not to complain. As he got older, he realized the sacrifices a parent makes.
As a Marine, he had to separate himself from emotional situations. He'd tell guys at work: "Concentrate on the things you can control. The things you can't control? You let those things go."
Sometimes Melissa didn't want to hear the practical side. She'd hug Erin and Jade a little tighter.
If she and Kevin went out–usually for doctors' appointments–they kept the twins in their stroller, covered from the neck down. Most people thought they were just lying face to face.
Kevin and Melissa wanted the twins photographed only with clothes on; they didn't want anyone gawking. Melissa understood that people were curious about things that looked different. But these were her daughters.
When a newspaper photographer asked to take pictures of the babies' diapers, on which the couple had written the girls' names, Kevin thought he saw her moving the camera to include their bodies. He asked for a new photographer.
A month before the surgery, Erin and Jade started pushing each other's face away. One would pull the other's pacifier out and throw it. Their bodies were ready to do things they couldn't.
Doctors knew Erin's and Jade's hearts were touching and that each was structurally normal, but they didn't know if the hearts were attached. They did MRIs, cardiac catheterizations, and echocardiograms. They sent images all over the country. Nobody could tell for sure.
The team at Children's Hospital–more than 100 people–spent months preparing for the separation. Groups met every week. They used models and dolls. They drew grids with arrows and color charts.
Lead pediatric surgeon Gary Hartman, who had met Kevin and Melissa before the girls were born, had successfully separated other conjoined twins. Still, he wasn't sure it could be done this time. There could be too much blood loss when he cut the liver. He might get to the girls' hearts and realize they couldn't be separated, leaving the chance for only one survivor. None of the medical books told him how to do this.
Pediatric plastic surgeon Michael Boyajian had never operated on conjoined twins. He would use tissue expanders to stretch the girls' skin and would help close their chest wounds. He called a mentor, who told him, "I don't know anything about that."
The hospital's bioengineering department designed computer models of the operating room. It needed more electrical power to support two heart-lung machines in case the girls needed bypass surgery.
Each twin had a medical team, and everyone wore colored badges. Erin's color was purple; Jade's was green.
Kevin asked Dr. Hartman if he could watch the surgery on a closed-circuit monitor. He'd missed the girls' birth, he said, and wasn't squeamish about blood. "That's the closest I could feel to being there for them," Kevin told him. Dr. Hartman said that Kevin's watching would put pressure on the surgeons, so he and Melissa didn't push.
They met with neonatology nurse manager Linda Talley every week the month before surgery. Kevin asked questions; Melissa held the girls and didn't talk much. He wanted to know who would tell them if one or both of the girls didn't make it, and how their bodies would get to the funeral home. Sometimes Melissa started crying.
Two weeks before the separation, Kevin sat in on a meeting with doctors. He thanked everyone for the time they had put in.
"I realize some of you are geniuses, tops in your field," he said. "But my wife and I realize that at the end of the day it really has nothing to do with how smart you are or how many surgeries you've performed. Really–it's not in your hands."
Melissa wanted to be the one holding Erin and Jade before the surgery. She had pictured this moment for months.
As she and Kevin walked down the hospital hallway, Melissa kept thinking she might lose her babies. She and Kevin had talked about what might happen.
If they were ready for the worst, Kevin thought, they wouldn't be as disappointed. Most of the time his realistic attitude was comforting–Melissa called him her rock–but it also got frustrating.
"How can you be so calm," she asked, "when our children may die?"
They had talked about where they'd want the twins buried, what the girls would wear, how they'd tell Taylor. Melissa had said that if something happened, she didn't want cameras there when they found out. Kevin had asked a friend at the barracks to play taps if there was a funeral.
As she walked down the hallway, Melissa wore Jade's baby blanket over her shoulder. Kevin held his arm around her. "You need to be strong and fight," Melissa told the girls.
"It's going to be okay," Kevin said.
He and Melissa had almost reached the surgical suite when Jade started whimpering. They leaned over and kissed the girls. Melissa handed Erin and Jade to the anesthesiologist, who had trouble positioning them.
Melissa thought: That's not how you hold them.
Melissa brought her laptop computer to the playroom where she and Kevin would spend the day waiting. They looked at pictures of the girls while Taylor played. Melissa's mother lit a prayer candle at home in Minnesota. It was June 19, 2004, the day before Father's Day.
Melissa felt calmer than she thought she would. "We'll take good care of them," Dr. Hartman had told her.
In the operating room, surgeons made an incision in the girls' chest and found a thin band of scar tissue connecting their hearts. The tissue was conducting electrical activity: One heart was acting as a pacemaker to the other. What would happen when they cut the band?
There was silence in the room when they did it. Erin and Jade's hearts started beating at different paces. A cardiac surgeon went to talk to Kevin and Melissa. "The hearts themselves are truly functioning separately right now," he said.
Hartman had a margin of error the thickness of a rubber band when it came to separating the liver. He had to avoid hitting a major blood vessel. In surgery, he saw a line of white tissue on the surface of the liver. That's where he would cut.
Cheers filled the room after doctors separated the liver. Dr. Kurt Newman, surgeon-in-chief, told Melissa and Kevin, "We've got two babies that are separate."
Hartman wasn't cheering. There was a lot left to do. Jade was taken to an adjoining room, where doctors worked on closing her skin. They expected to have a harder time with Erin, whose heart stuck up into the air.
Each doctor had a camera on his headlight so one could see what the others were doing during the closures. Jade was taking longer than Erin. The geometry wasn't as straightforward as they'd thought–they had trouble getting the tissue over the opening in her chest. Newman scrubbed out and went to see what Erin's doctors were doing. Boyajian came in to help. They had barely enough skin to close Jade.
Melissa and Kevin didn't know it, but Jade was having trouble breathing. Doctors spent 30 tense minutes stabilizing her, while Erin was wheeled to the newborn intensive care unit, six hours after the first incision.
When Kevin saw Erin, he started crying. He kissed her purple hat. Melissa hugged him as they both touched her. Wow, Melissa thought, maybe he had been afraid.
The doctors brought Jade up from surgery. Kevin stood in the middle of the room and looked back and forth. His daughters were in separate beds.
"Where's Jade?" Taylor asked the first time she saw Erin at the hospital. Kevin and Melissa had told her that her sisters were having surgery and that they wouldn't be "stuck together" anymore.
Kevin and Melissa wanted the twins back in the same bed. They worried they'd miss each other.
Nurses in the intensive care unit put mirrors next to the girls' beds so each girl would think she was looking at her twin. They gave each a blanket with the other's scents on it. They put positioners, similar to sandbags, next to the girls so they'd feel the weight they were used to.
Melissa and Kevin spent their days in the intensive care unit, talking to the twins and reading them Taylor's favorite books.
Doctors thought Erin and Jade would spend at least a month at the hospital, but they were healing quickly. They went home after 13 days.
The first night, Melissa and Kevin kept getting up to look at their daughters sleeping. Melissa assumed they'd look smaller after they were separated, but they seemed bigger.
She could finally hold the girls to feed them. She dressed them in outfits they couldn't wear before. She snuggled with them one at a time.
Erin and Jade couldn't do the things other four-month-olds could do. They were behind because they'd been born six weeks premature and spent the first part of their lives conjoined. Melissa had to get them comfortable lying on their stomachs, to build arm and neck strength.
Bills were adding up. Insurance covered nearly all the medical costs–almost $1.5 million–but Melissa and Kevin had gone from two incomes to one while their family size had doubled.
Strangers sent clothes, cards, small checks. Children's Hospital helped get a donated van. Chevy Chase Bank set up a trust fund and contributed $10,000.
A few people accused the couple of exploiting their children. Someone sent hate mail reacting to the couple's interracial marriage. Police kept watch at their townhouse.
A physical therapist came three times a week to help Erin and Jade catch up. She saw what Melissa and Kevin had already noticed: Erin wasn't kicking as Jade was.
Doctors thought Erin might be having abdominal pain from surgery or a muscular problem. They weren't suspicious of a spinal-cord injury because they hadn't operated near there and there weren't any episodes of shock or low blood pressure.
When Kevin and Melissa took the twins for their six-month shots, Jade screamed; Erin didn't.
An MRI showed a problem with Erin's spine. Surgeons looked at blood-pressure strips and other records. They went through videotapes and their own recollections. Nobody could understand what had caused Erin's injury. They told Kevin and Melissa that blood flow or oxygen to her spine had probably been compromised during the operation, causing nerves to die. They didn't know how it had happened or what it meant for Erin's future.
A few months after the surgery, when the girls still shared a crib, Kevin walked into their room to check on them. He was tired. He saw a baby kicking. This is crazy, he thought–look at her move her legs. He called Melissa: "Erin's moving her legs!"
"Honey," she said. "That's Jade."
Jade started crawling in December 2004, when she was ten months old. Erin could roll from her stomach onto her back.
Melissa wrote down important dates: Jade's first tooth, Erin saying "Mama," Jade clapping for the first time. It was hard when Jade did something Erin might never do, but Melissa and Kevin always celebrated.
They could see Erin's frustration. She'd cry and point as she watched her sisters. If someone was carrying her, she'd throw her body toward whatever she wanted; Melissa had to hold on tight. They were eager to get Erin a "standing frame," which would allow her to be upright, so she could see the world the way Jade did.
When Erin was 11 months old, she fractured the bone above her ankle. Her leg was swollen, but she hadn't cried because she didn't feel the pain. Nobody knew how it had happened. The physical therapist said the cause could have been as simple as Erin's leg being bumped on her crib.
Melissa realized she had more to learn about spinal injuries. She worried about Taylor and Jade jumping and playing near Erin. They'd need to remember how fragile she was.
Erin and Jade were eating finger foods and drinking from cups with straws by the time they turned one. Doctors and nurses came to their first birthday party at the family's new home in Stafford. Dr. Boyajian, their plastic surgeon, brought woodworking gifts he'd made. Kevin, who was away on a seven-week work trip, sent camouflage dresses for the girls.
Three months after her birthday, Erin got her little red car. She could finally go where her sisters went without being carried. Her arms were too short to wheel herself around, but Jade liked to stand behind her and push.
In June 2005, soon after Jade started walking and Erin started pulling herself along with her arms, Melissa and Kevin found out Taylor had problems, too.
When she was born, they'd noticed that her right foot was smaller than her left and she had a slight dimple on her lower spine. But their pediatrician had told them lots of people had different-size feet.
As Taylor grew, her right leg from the knee down stayed smaller than the left. Her right toes started to point outward.
Kevin and Melissa made an appointment for x-rays, but a few days later they found out they were having conjoined twins. Soon Melissa was on bed rest. They didn't take Taylor to the doctor until after the girls were separated.
When she heard that Taylor had a spinal-cord lipoma–a benign tumor–Melissa thought doctors were looking at the wrong MRI. They couldn't be talking about her daughter.
"I'm a bad mother," she told Kevin. "I should have brought her in sooner."
"If there's one thing you're not," he said, "it's a bad mother."
Taylor would need an operation on her spinal cord. If she didn't have it, she'd likely become paralyzed from the waist down and lose bowel and bladder function, like Erin. A geneticist told Kevin and Melissa the girls' problems were unrelated.
Taylor was excited about surgery. "Am I gonna have a scar like Jadie and Erin?" she asked. She lay down and put Barbie dolls on her stomach.
"What are you doing?" Kevin asked.
"They're operating on me," she said. "They're separating my liver."
Melissa couldn't imagine handing another child over for surgery.
She wrote in her Web journal: I feel like a boxer who keeps getting knocked down, and every time I start to recover and get back up, I get hit again. We've decided we need to start playing the lottery, though, since our children have ended up with rare conditions. . . . It's been difficult not to ask, "Why us?" but Kevin just says, "Why not us?"
Melissa and Kevin clapped for Jade every time she closed the basement door. The door is near where the girls play, and they worried she'd get too close to the stairs. "Jadie, go close the door!" they'd say. She'd walk over and push it closed.
One morning last spring while the girls were playing on the floor, Erin started pulling herself along the carpet, her legs dragging behind her. Melissa thought she was going for a toy. Then she noticed she was headed for the basement door. Melissa started crying. She knew she shouldn't help her: Erin wanted to do what Jade did.
Erin pulled herself to the door, the farthest she'd ever crawled. She pushed the door a little, moved herself forward, and pushed it again until it closed.
She had a big smile and was breathing fast. Melissa hugged and kissed her.
"I'm so proud of you!" Melissa said. "You did such a good job."
Melissa called Kevin at work but could barely speak. "What's wrong?" he kept asking.
That evening, the couple left the basement door open. He had to see for himself.
"Erin, go close the door," they said.
She started her crawl. This was something she could do, too.
Physical therapist Heather Akgun arrives at the Buckles house with cupcakes on a September afternoon. She'll be having a baby, so it's her last day with Erin and Taylor. Akgun started in March and was supposed to stay for six weeks, but she got hooked.
Taylor goes first. She sits in her small plastic chair as Akgun stretches her right ankle to the side. Taylor's operation went well–doctors removed most of the tumor–but she'll need more surgery as she gets older.
During therapy, songs play to keep Erin calm. With Erin in his arms and Jade holding one of his hands, Kevin dances to "The Farmer in the Dell" while Akgun works with Taylor. Erin watches, then crawls toward Akgun.
Jade stands on a stool on the carpet so she can be in the middle of everything. Ever since the separation, she has liked attention. She'll yell, "Mom!" over and over. If Melissa is carrying Erin, Jade will run over and grab onto her mother's legs.
Erin wants to play with the toys she sees Taylor using. Jade picks them up and gives them to Erin. "Thank you," Jade says.
"Erin's supposed to thank you," Melissa laughs.
When it's Erin's turn, Akgun lifts her under her arms and carries her toward the steps, pushing one foot in front of the other. She puts Erin on her knees on the steps, holds her bottom, and pushes her. Erin reaches for the next step.
When Akgun asks if she wants to do her walking or her exercises, Erin says yes to both.
Erin puts her fists together and pulls her body from side to side. They're trying to get her to turn over onto her stomach.
"All the way, all the way–yeah!" Akgun says, helping her. Everyone claps.
"Probably the first muscles that are going to come back are the hip flexors," Heather says during therapy.
"Anybody catch that?" Kevin says." 'Those are gonna be the first muscles that come back.' That's why we love Heather–Heather thinks like we think."
Kevin always assumes he'll get more rest when he's out of town, but he hears babies crying in his sleep.
He takes two long trips a year with the Drum and Bugle Corps. Melissa's parents usually stay with her, but last fall Kevin's mother and his sister, Kimberly, and her family moved in temporarily. They'd been living in New Orleans, and Kimberly's home was damaged during Hurricane Katrina.
When he travels, Kevin brings lots of photos of the girls. Sometimes the surgery seems like years ago.
Melissa doesn't want Kevin to miss anything. Erin and Jade get on the phone and tell him about the snacks they're having. The day he left for Pensacola in October, Melissa called to tell him what happened when they were watching Barney. When the theme song came on–"I love you, you love me . . . "–Melissa ran to hug and kiss the girls, the way she always does.
"Hug Daddy," Erin said.
Sometimes Kevin gets upset when Melissa tries to do too much. One of the girls will cry late at night and she won't wake him because he has to get up at 4:30 AM to commute from Stafford to the Marine Barracks in Southeast DC. That doesn't matter, Kevin says–she wakes up early to pump milk and she's home with three toddlers all day.
He's given Melissa spa gift certificates, but she puts them in a file. When Kevin is home on weekends, his son, Kevin Jr., stays over. They play basketball and video games, then Kevin runs upstairs to play with the girls.
Money is tight, but Kevin worries more about helping Erin walk and getting Taylor's leg fixed. He likes how excited the girls get when he comes home from work. He cheers Erin and Jade on while they try to feed themselves with forks.
"Being tired, being frustrated," he says, "all those things go away."
He and Melissa have had a few nights out since Erin and Jade were born. Intensive care nurses offered to babysit so they could go to the Marine Corps Ball. Kevin's mother watched the girls while he took Melissa to dinner and a movie on her birthday.
They could have just sat outside somewhere, Melissa says–it didn't matter. They didn't worry about the girls that night.
At 19 pounds, Erin is still too small for a wheelchair. Melissa and Kevin are thinking about how they'll widen doors and build ramps. They wanted a pool–doctors say the water would be good therapy–but their yard is too hilly. Maybe one day they'll get a Jacuzzi.
For now, Erin uses her red car and her "scooter," a crawling frame molded to fit her body. She lies in it and pushes herself around. "Walk," she tells Melissa when she wants to get in. She wears an abdominal brace to keep her spine from curving. The first few days, she didn't like it–she couldn't touch her heart.
When Melissa was a college student in Minnesota, she worked as a lifeguard at a camp for kids and adults with disabilities. Some of her campers were paralyzed. She became close with an eight-year-old girl who was in a wheelchair. The girl wore a diaper and had a brace on her torso. Melissa held the little girl's hand and helped her get ready for bed.
The girl told Melissa it was hard seeing other children running around; lots of campers said they didn't like being stared at. Melissa sees people staring when Erin has her leg braces on.
Erin likes doing things on her own, the same way Melissa's campers did. When Taylor and Jade run around, Erin says, "Run, run, run" and crawls as fast as she can. She wants to sit in a chair by herself, so she pushes Melissa's hands away. If she thinks she's falling, Erin says, "I got you"–the same thing Melissa has told her so many times.
On a warm fall day, Erin is rolling marbles down the small plastic slide in the sunroom. Melissa sits next to her so she doesn't fall backward.
"Do it again!" Taylor says.
Jade steps up behind Erin–she wants to slide now. "No, no, Jadie," Erin says.
Jade backs down and starts dancing. She rarely needs music.
Soon the slide is old news. Jade picks up a toy cell phone: "Hello?" Erin wants one, too, so Melissa grabs another. "Hello?" Erin says. They enjoy pretend conversations.
Melissa and the girls spend most of their time at home. A cold can be life-threatening for Erin. Her chest muscles are weak, so it's hard for her to cough. She's at risk for a respiratory virus that can cause pneumonia.
At night, Erin and Jade help bathe each other. Erin falls asleep on her parents' bed, where Kevin reads to her while Melissa tucks in Jade and reads to Taylor. Lately Jade's been getting up in the middle of the night.
"She'll go back to bed for Daddy, but not for me," Melissa says. "He's the Marine."
Kevin and Melissa drive to Children's Hospital a few times a year, where Erin and Taylor see their urologist, physiatrist, orthopedist, and neurologist in one visit. Melissa does most of the talking. Kevin tells her she should be a nurse. She's thought about it–she likes medical shows–but she'll probably go back to teaching once Erin and Jade are in school. She wants summers off with the girls.
Besides, she says, "if I had a patient die, I don't know how I'd deal with it."
Jade doesn't need special checkups anymore, but she still sees Dr. Boyajian, the plastic surgeon. She's learned to say his name. Jade has a bone sticking up from her chest–she got more of the chest wall during surgery–so she'll need another operation to correct it.
Melissa e-mails photos to the doctors, nurses, and volunteers who helped them. A card hangs on the wall of their house, a gift from intensive care staff for the one-year anniversary of the surgery. "Separate and apart," one note on it reads, "but together forever in our hearts."
Kevin and Melissa have seen Erin move her legs in the bathtub and when she first woke up, but they weren't sure what it meant. Doctors said it was reflexes.
At an appointment at Children's Hospital in September, a doctor saw the movement they'd seen.
"Are you doing that?" Dr. Sally Evans asked as Erin lay on the examining table. "You are! Congrats."
Melissa says she believes miracles happen–she lives with two of them. She's seen talk shows about people who were told they'd never walk again but did.
"When she hears music, she dances," Kevin says of Erin. "I can't wait to dance with her."
They look for signs.
"Yesterday," Melissa says, "I was tickling her and I started low, down by her stomach, and went up the sides. . . . It was probably right when I got to her lower rib cage that she would start giggling."
When the girls sing "If You're Happy and You Know It" and they get to "stomp your feet," Melissa usually changes the words. She'll say, "pat your tummy" or something else Erin can do. Lately she hasn't had to: Erin grabs her legs with her hands and pushes them toward the floor.
Kevin has wondered whether Erin will resent Jade's abilities. He thinks Jade will be protective–she likes feeding Erin snacks and giving her water.
When Melissa gets sad that Erin can't walk, she thinks about the four families she's heard from since the twins' surgery. None of their conjoined twins survived. She talked to one pregnant mother every Friday for months. She and Kevin visited another couple at the hospital, then went to their babies' funeral. Melissa reminds herself that she has a lot to be thankful for.
Sometimes she dreams about Erin. In one dream, Melissa and the girls were going grocery shopping. She took Taylor out of her car seat and put her down, then Jade and Erin. Erin stood on her own, then took a few tentative steps. Taylor screamed, "Erin's walking, Mommy! Look–Erin's walking!"
When Melissa turns on a video about the separation, Erin and Jade know it's them. They say their names. Melissa thinks: What might Erin and Jade remember?
She wishes she knew what sensations they shared. Some conjoined twins are older when they're separated, so they can talk about what it felt like.
Erin and Jade turn two this month. They'll form memories through pictures and stories. On their bedroom wall is a photo of their faces when they were newborns. When they flip open Melissa's cell phone, they see a picture of themselves joined together. They love looking through photo albums. Melissa points to a collage from Children's Hospital above their changing table and tells them: "That was the day of the surgery."
Melissa thinks about what Erin and Jade will ask her when they're old enough to understand. Will they realize how lucky they are? What will they say to people?
She wonders about the bond the girls will share. They were sitting together on their little bench recently when Erin started talking to Jade. Kevin's mother, who was watching them, couldn't understand a word Erin was saying. Jade laughed and laughed.
