In the days before doctors were scheduled to repair her shattered skull earlier this month, Noora Afif Abdulhameed occasionally talked about what was going to happen to her. The words would tumble out all at once, in one sentence, in between the games and laughs that blocked out the fear.
“I think surgery Friday,” the 7-year-old Iraqi girl would say to her friend Susi Eggenberger, an Arundel resident who has been like a mother to her during her stay in Maine.
“It’s been on her mind a lot,” Eggenberger said the day before the surgery. “Needing a few more hugs today.”
As scary as the prospect of brain surgery was to Noora and her father, Afif Abdulhameed Otaiwi, it was what they had been waiting for since being flown to Portland five months ago by No More Victims, a nonprofit group that brings war-injured Iraqi children to the United States for treatment.
On Dec. 11, doctors were just 24 hours away from repairing the damage inflicted by an American sniper’s bullet two years ago in Noora’s hometown of Heet. The bullet made a large hole in Noora’s skull and destroyed her cerebral membrane. In several operations in Iraq, doctors removed pieces of bone and covered the gaping wound with skin from Noora’s thigh to temporarily protect her brain.
But to be whole again, Noora needed replacement “bone” attached to her skull, a prosthetic that would be with her the rest of her life.
In the 154 days since they arrived in Portland for the operation, Noora and her father have been on a summer boat ride on the Atlantic Ocean, celebrated Noora’s seventh birthday, gone trick-or-treating, experienced the election of an American president, shared a traditional Thanksgiving with their friends, had their first snowball fight.
She has also been through frightening and painful medical procedures, and she and her father missed the birth of Noora’s little sister. Looming over it all was the prospect of a surgical procedure that had the potential to finally heal her, but carried substantial risk as well.
It’s been a long wait.
RECORDING GOOD TIMES IN MAINE
It’s Thursday, Sept. 25. Noora lights up when she walks into the common area at the Ronald McDonald House and sees her adult friend Nancy Gee, who is helping her make a scrapbook documenting her stay in America.
Noora is wearing brown slacks, an orange shirt and a white sweater. The outfit is topped off with a pink princess hat that covers the growing bump on her head, the result of a medical procedure performed in August.
During that short operation – a precursor to the major surgery that awaits Noora in December – Dr. John Attwood, a Portland plastic surgeon, inserted a balloon under Noora’s healthy scalp. Every few days, saline is injected into the balloon to expand it and stretch the skin so Noora will have some scalp to cover her new bone. The bump on her head is now about the size of a tennis ball.
Noora has her own little green scrapbooking bag filled with glue, staples, stickers, colorful paper, scissors, a hole puncher and other supplies. Gee has brought her personal bag, too, and all of the materials are spread out on a table. Noora sits down and gets to work.
“Aha,” Gee says as Noora holds up some construction paper.
“Aha, aha,” Noora responds, gluing a photo of herself to the paper.
The 12- by 12-inch scrapbook is filled with memories of Noora’s time in Maine. Gee gave Noora and her father a camera so they could take pictures wherever they went. Noora decorates them with stickers, rhinestones and other doodads before adding them to the scrapbook. There are photos of Noora at the beach, at the circus, giggling with friends, playing with a staff member who works in the upstairs office at the Ronald McDonald House.
“This is one of her favorite places to go, is the playground,” Gee said, holding up a photo.
Noora started the scrapbook within a week of her arrival in Portland. Gee wants her to be able to show her family what she did here, and hopes it will be a memory book for Noora when she’s older. She imagines Noora thinking that “even though I went through all this, there were still things I could do; there were people around me who were loving,” she said.
On the other side of the room, Noora’s father is preparing his laptop for their daily teleconference call to their family in Iraq. It’s the end of Ramadan, and according to tradition, Noora must have a new outfit to wear.
Eggenberger bought her a white blouse, a red jumper with little Scottie dogs on it, a red hat with a turned-up brim, black stockings and new shoes. She plans to have Noora model the outfit for her mother, Afrah, to get her approval.
“I’m hoping this works OK,” Eggenberger says, showing off the dress on its hanger.
The computer makes a ringing sound, and Noora beats her chest excitedly with her hands.
“Hallo, hallo, hallo,” Otaiwi says, then begins speaking in Arabic to his wife. He moves the webcam around so it is pointing toward his daughter. Noora holds her hands up in the air and dances up and down. She is thrilled to see her mother.
“Hello, my sister, how are you?” Eggenberger asks.
“Good,” Afrah replies. “How are you?”
“Hi, Afrah,” Noora says, and giggles.
Noora’s brother Mustafa and sister Haba come into view. Haba talks to her father in Arabic and makes goofy faces at him.
Noora heads upstairs to try on the red dress. Gee has packed up the scrapbook project and stops her little friend on the stairs to say goodbye. They blow each other kisses.
“Bye, Nancy,” Noora says. “See you later.”
A few minutes later, Noora is modeling the dress for her mother. “Hallo, Mama.”
A BIRTHDAY PARTY, AMERICAN-STYLE
At 4 p.m. the following Tuesday, Sept. 30, Noora is upstairs at the Ronald McDonald House getting ready. She knows there’s going to be a party to celebrate her seventh birthday, but she doesn’t really know what to expect. Birthdays are celebrated in Iraq, but not like in America.
When she comes downstairs, she’s all decked out in a crimson-colored princess dress with puffy sleeves, gold trim and a big bow in the back. She’s wearing gold-braided shoes and a tiara with a fuzzy pink border.
Eggenberger steers her toward a darkened playroom where eight little girls are hiding, waiting to surprise her. No one’s really surprised – but they have fun anyway, laughing and blowing their noisemakers.
A big table in the main room is decorated with a “Happy Birthday” banner and loaded down with hand-decorated gifts and a butterfly cake made by one of the moms.
“Now you have to blow the candles,” Eggenberger tells her. “Blow them out.”
Otaiwi tells her what to do in Arabic, and Noora begins blowing softly, but the candles keep re-lighting. They’re trick candles.
Otaiwi chats with his English teacher and some of the moms while the girls eat their cake and ice cream. Then it’s time for pin-the-tail-on-the-donkey, followed by the breaking of a pinata hanging from a swingset outside.
The last business of the day is to let Noora open her presents. She sits in an Adirondack chair, and all her friends gather around her. One of them hands Noora a wrapped gift. She looks at it, puzzled.
“She doesn’t know how to do it,” one of the girls says.
Noora quickly gets the hang of it, though. She pulls a heart-shaped Barbie tin out of the package, and all the girls go, “Oooohhh.” She opens up some watercolors. “Awesome.” Next she finds a fall hat inside a new backpack. “Oh my gosh, lucky.”
There’s a pair of pink-and-white Crocs, an art set and a Dora the Explorer tea set.
After a while, Noora begins to look a little exhausted. She opens packages containing a skip ball, some candy and other goodies, a pair of pants, a double-dutch jump rope and a necklace.
“Hey, Noora, you have tons of gifts,” one of the girls says.
“Yeah,” another says. “She’s like the birthday-present queen.”
FATHER VOICES GRATITUDE, ANGER
Noora is not accustomed to such bounty.
Her family has given up just about everything to pay for her medical care in Iraq. No More Victims paid for Noora’s and Otaiwi’s travel to the United States, and helps pay for their food, clothing and other expenses during their stay in Portland. The group also sends a monthly stipend to their family in Iraq so they can survive while Otaiwi is out of the country and away from his job as a high school history teacher.
To help with expenses, the congregation of the First Parish Unitarian Universalist Church in Kennebunk and the students and staff of The New School, a Kennebunk-based alternative-learning high school, host a benefit dinner in their honor Oct. 10.
About 30 volunteers put together a mostly Middle Eastern meal of stuffed grape leaves, falafel, kefta kabobs, lentils with spinach, filfil rumi mahsi (stuffed green peppers) and other fare. Local businesses contribute, too.
On the night of the dinner, 118 people show up. Otaiwi’s English teachers from Portland West are here, but most of the diners have never met either him or Noora.
“It’s a wonderful cause to show the community that we have compassion for everyone involved,” said Carolyn McAdams of Kennebunk.
Donald Rochon and his wife, Kathy, both active in the church, drive down from South Portland to attend the dinner.
“We feel it’s a travesty that it happened,” Donald Rochon said of Noora’s head injury. “We shouldn’t be there in the first place.”
Noora and her father sit at the head table. Noora is wearing her Ramadan outfit. In the back of the room are two maps of Iraq made by students at The New School. The students had a few days before interviewed Otaiwi about his family’s life in Heet, a city with a population of about 20,000, and had printed out Google images of Noora’s house, the hospital where she was initially treated and her school.
“Seven people in Afif’s family have been killed or injured in the war,” one note on the map says.
There’s also a star by the Euphrates River: “Since the war, people go here for water.”
After dinner, Doug Rogers, Susi Eggenberger’s husband, introduces Otaiwi so he can, Rogers says, “put a face on what we so infamously call ‘collateral damage.’ ”
In broken English, Otaiwi thanks everyone for coming and makes a joke about the fact that his language teachers are watching him and will correct him later. He tells the group how his family has lost everything trying to get Noora the medical care she needs, and how frightened he and Afrah have been for their child during the past two years.
“The doctor tell me, ‘We cannot help you,’ ” Otaiwi says. ” ‘Your daughter, maybe tomorrow death.’ What can you do when your doctor tell you that? You can feel when your child sick. I can’t remember how many days, I can’t sleep that day. So all the time, I look at my daughter. Maybe now she dead.”
Otaiwi says that after her last surgery, Noora asked him why someone shot her when she hadn’t done anything.
“The war is bad,” he continues. “Everything broken, everything is damaged. I hope this war stop, not a long time. We want to stop this war tomorrow.”
“Yes,” people in the congregation say, followed by applause.
“If the war stop tomorrow, we can peace,” Otaiwi says. “Thank you to help my daughter. Thank you to help another child in Iraq, because many child in Iraq need another people to help them.”
The group gives him a standing ovation.
Otaiwi’s opinions on the war are not always so well-received.
He has spoken to several community groups about life in Iraq, and while he is always careful to say thank you for the help his daughter is receiving, at times he speaks more bluntly.
During a visit to the Foreside Community Church in Falmouth, some members of the congregation found some of his remarks offensive.
Bill Gregory, an interim pastor at the church, recalls that Otaiwi “said, in so many words – and I can’t quote him exactly – if we hadn’t bombed Iraq, that they had hospitals that could have cared for things that happened to people such as what happened to Noora. And then he went on to say, and the thing that was remembered most clearly, was, ‘You need to know that Bush lies and Cheney lies.’ ”
Some members of the congregation heard in those words a father’s pain and anger, and were moved to tears.
For others, Gregory said, “it was a complete surprise, and initially offensive.”
The staff met later with offended church members and sent a letter to the congregation explaining why Otaiwi had been invited to speak. The controversy quickly passed.
Gregory says that, as an outsider, he was impressed with the way the church handled the situation. He says his own view is that Otaiwi is someone who is “speaking his own truth.”
“He’s angry at what’s been done to his family,” Gregory said. “He said in the course of his remarks, ‘My father-in-law was killed, my neighbors’ children were wounded and killed by your bombs.’
“In order to have his own dignity, he can’t just ignore that and fall over backwards thanking us for our generosity to help mend his daughter.”
Just before Thanksgiving, Noora and her father hear from the doctors at Maine Medical Center that Noora’s surgery is scheduled for Dec. 12.
On Thanksgiving, more good news: Afrah has just given birth to a baby girl.
“I call her Somaya, but my son and all my kids want another name,” Otaiwi says. “They call her Farah because in a movie in Iraq, beautiful movie, she’s a beautiful girl in that movie, Farah. They call my daughter same.”
Noora and her father get an occasional glimpse of Somaya on the computer when the finicky webcam is working. When it’s not, sometimes they can hear the infant cry.
“I think she very pretty,” Noora says.
When the first snow comes, Noora quickly learns how to make a snowball, and throws one at her father. She giggles when Otaiwi tells the story. Otaiwi says that when he wants to go for a walk, Noora usually refuses, “but when the snow come, she want to walk.”
They’ve been joined at the Ronald McDonald House by two other Iraqi families who are waiting for their children to have heart surgery. Otaiwi has been helping them adjust to life in Maine.
“They were petrified when they came, so it was nice to have him here,” Eggenberger says. “He spent a lot of time translating when the other translator wasn’t here, and helped them in the kitchen.”
Noora and her father have seen Noora’s neurosurgeon, Dr. James Wilson, twice for pre-surgery examinations.
Otaiwi has told Wilson he’s thankful the operation is going to happen here, because doctors in Iraq told him it involved great risk.
“I looked him in the eye and I said, ‘It’s just as risky here as it was there, it’s just that we’re willing to try it,’ ” Wilson recalls. “The other alternative is that you leave the poor girl alone. There are great risks to her – the risk of infection, the risk of failure – it’s all very real in this setting. But ethically, what else could I do? You absolutely want to give this girl the best chance you can.”
Wilson and Attwood, the plastic surgeon, both of whom are donating their services, have done a lot of similar surgeries on children who have been in car accidents or suffered other forms of trauma, but Noora’s medical history complicates her situation.
Her Iraq operations, along with a previous infection, have left a tremendous amount of scarring between the skin and the brain.
“This is technically difficult from a neurosurgical standpoint, because she has skin that was applied basically directly to the brain,” Wilson said, “and I’ve got to take that all down with not hopefully injuring her brain before I reconstruct her skull.”
Wilson says he’d rather be operating on any other part of Noora’s brain.
Her wound is large, and its location is right over “an extremely important part of the brain”: the speech centers.
The risk she faces is that she will wake up and not be able to speak – or not understand speech at all.
Noora also has spinal fluid leaks because the protective covering surrounding her brain was destroyed by the bullet and by her previous surgeries in Iraq.
During the operation, Wilson will create a watertight barrier around Noora’s wound using the sac that surrounds the heart of a calf, and then put a drain in her back to divert her spinal fluid elsewhere.
The drain is temporary, but necessary for Noora’s wound to heal properly.
“Spinal fluid will break down any fresh wound,” Wilson says. “It’s somewhat caustic.”
Noora’s replacement skull bone is courtesy of Stryker Corp., a medical equipment company that is donating the plate, which will be screwed into her existing skull. Wilson sent the company her CT scan, and Stryker used it to make a 3-D reconstruction of her head.
“They make a computer-rendered plate that matches the other side to try to get some symmetry,” Wilson explains. “So I’m going to basically have a plate that roughly fits the contour of her defect.”
This is not something that would ordinarily be covered by insurance. The plate, which is attached to the skull with titanium plates and screws, would probably cost about $10,000 out of pocket, Wilson says.
During the surgery, Wilson and Attwood will fit the plate to Noora’s head, then take it away to a table where they can use high-speed drills to fine-tune the fit.
After tinkering with the plate, they’ll put it back on her head and stretch her scalp over it – the tissue that’s been stretched by the balloon all these weeks – to see how it looks and fits. They’ll put the skin on and off about a half-dozen times until everything seems just right.
Noora’s skull will continue to grow as she ages, but it won’t outgrow her old wound and the new plate. So if all goes well, she won’t need another operation when she’s older.
And once she heals, she’ll have no more restrictions on what she can do.
“Kind of nice, isn’t it?” Wilson says.
SURGERY PROCEEDS SMOOTHLY
The day before the big surgery, both Noora and her father are feeling nervous.
Otaiwi says he knows things are different here, but in Iraq, Noora had an infection after one of her operations, and he worries that could happen again.
He says Noora is scared and expressing her feelings in uncharacteristic ways – shouting an answer when he asks her a question, for example.
“If I ask her to do anything, she refuse that,” he said.
To ease her mind, Otaiwi and Eggenberger have taken Noora to visit the other Iraqi children in the hospital so she can get used to all the tubes and machines. She needs constant reassurance about needles because she’s been stuck so many times in her short life.
The bulge on her head is now about the size of a grapefruit.
“Quite a while ago, we were sitting at the table, and there was a cinnamon bun on her plate,” Eggenberger says. “She pointed at it and said, ‘Like Noora.’ ”
The next morning, the surgery is under way by 10:30 and lasts about 6 hours, longer than Wilson expected. Otaiwi is able to get in touch with his family on the laptop while Noora is still in surgery.
Then, when the operation – and all the waiting – is finally over, he calls Noora’s mother.
Afrah sees her daughter over the computer and tells her husband, “Now I can finally sleep.”
In an interview immediately after the surgery, Wilson says he’s confident that his biggest worry – brain damage – is no longer a concern.
Everything else looks good, too. “The forehead looks beautifully symmetric,” Wilson says.
Noora should have her hair back soon. That’s less important than protecting her brain, but important just the same.
“Within a month you’ll have significant hair coverage, I think,” Wilson says. “And we didn’t cut a lot of her hair, so she still has a big ponytail. ”
The spinal fluid drain is out by early the next week. Soon after, Noora is out of intensive care and in the pediatrics unit. All of her IVs and tubes are gone. The swelling in her face and neck has gone down. She is active and starts playing right away. Her favorite place to go is the pediatrics unit playroom.
“They have trikes and cars and stuff that she can ride in the hallways, and she does that,” Eggenberger says. “She’s actually having a great time. She’s making all sorts of new friends up on the peds floor, too.”
Noora doesn’t want her father to leave her side, but he manages to sneak off one day for three hours.
He goes to the Ronald McDonald House for a quick shower and makes Noora some soup. He starts going to the house every day to cook for Noora because, other than the fish sticks the hospital serves, she’s not crazy about the food there.
On the Friday after surgery, Noora is released and moves back to the Ronald McDonald House.
For a couple of weeks, Noora’s doctors will check on her regularly to make sure there’s no infection and to ensure the skin graft isn’t failing.
Wilson says that if all goes well, father and daughter should be able to go back to Iraq in mid-January.
Eggenberger says Noora and her father found it hard to visualize going home to their family until the surgery finally came through.
“And now they’re getting very anxious to get home and see everybody, and meet their new sister and daughter.”