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Once-conjoined Twins, Family Revel in Life Outside Hospitals

Posted - Jun. 4, 2004 at 6:23 a.m.



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The Dallas Morning News

(KRT)

DALLAS - Ahmed lies on the carpet whining, but he refuses to be comforted. When his mother offers him a soft, stuffed horse, he shoves it away and whines louder. In another corner of the living room, Mohamed plays with a toy car.

On television, a different drama unfolds in Arabic: There is a man with gray hair and glasses whose bearing suggests wealth, a woman with glossy black hair and a baby. Periodically, a younger man appears. Pinched brows on his handsome face suggest inner turmoil.

Finally, against the backdrop of the TV soap opera, Ibrahim Mohamed Ibrahim walks across the room, and reaches down toward his son. He takes Ahmed's hands, lifts him to a standing position, then pulls him into his arms and tosses him gently in the air. Ahmed laughs with delight. From his spot on the floor, Mohamed waits expectantly for his turn in his father's arms.

"We're living a normal life now with my kids," Ibrahim says. "I don't have to travel every day to the hospital and come home at night. I wake up, and I know they're here."

The boys continue to make progress: Mohamed still requires help walking, but he can scoot along the floor on his bottom. Ahmed, who has been fitted with the same kind of leg braces his brother got late last year, is standing for longer periods.

But punctuating the joy and hopes for the future are the ever-present nostalgia for home, moments of frustration over a lengthy recovery time and the fatigue that comes from being in the media spotlight.

Also, there are questions: When will the boys be able to keep food down without throwing up? When can the family return to Egypt? How will the twins come through the reconstructions of their skulls? Although doctors have told the parents that the next surgeries won't have nearly the risk of last fall's separation, Ibrahim is worried.

"Before they did the first big surgery, I never slept with either one of them on the bed," he says. "Now they sleep with me, they hug me, they kiss me. I don't want to lose that."

The March day when the boys were discharged from the hospital was a mix of excitement and fear for Sabah Abu el-Wafa. She would live with her sons outside of a hospital for the first time.

After her twins were born, they lived in a Cairo hospital, a day's train ride away from her home outside Qus. They came to the United States in June 2002. She only joined them in October, a few days before they were separated at Children's Medical Center Dallas. In November, they were transferred to Medical City Dallas.

Now, assisted by Egyptian nurse Naglaa Mahmoud, Abu el-Wafa would have her sons to herself.

Everything - from the rules about keeping the boys' protective helmets on to keeping the floor clean for their play - had been carefully planned.

Still, Abu el-Wafa says, "I was afraid. I was worried."

What if something happened that she, her husband and Mahmoud couldn't handle?

But that first night at home went well, she says. "They played and they stayed up late," Abu el-Wafa says. It was about midnight before they fell asleep.

Everything else was normal, she says. "After two days, I felt very comfortable."

While she is grateful for the hospital staff's help with the boys, she loves having them at home.

"I live in my home, and I have my kids with me," she says. "No one is coming in and out of the room."

On a recent evening, family friend El-Sayed "Joseph" Hassan visits the family. Several people from the local Muslim and Arab community have befriended the family. But it's Hassan, an Egyptian immigrant and father of twin daughters himself, who has become an anchor for the Ibrahim family in Dallas.

Hassan has traveled with the family for national TV appearances and to Houston when they met with Egyptian president Hosni Mubarak in April. They compete to see who makes the best Egyptian dishes, and the boys call him "Uncle Sayed." "Are they homesick?" Hassan says. "Yes. ... I'm trying to do the best I can to make them feel (at) home."

This evening, he sits on the living room couch holding Ahmed. The fireplace mantel is lined with stuffed animals. A framed print on one wall depicts two steamships.

Abu el-Wafa points out that Ahmed is holding his shoulders and head upright and looking around the room.

"Ahmed ... he couldn't do that before," she says. "Now he can move his neck and stretch himself." As if to prove his mother right, Ahmed stretches in Hassan's arms and looks at the ceiling.

"Mohamed can sit on the floor and move around very quickly," she says. "They love to listen to music and dance. They both clap and they dance."

"Mohamed, come here," his father says in English to show how agile Mohamed is becoming.

When the boy rolls from a lying position on his side to a sitting position, leveraging himself with his left arm and hand, everybody, including Ahmed, claps and cheers.

Hassan plays a game with Mohamed. While the boy holds his father's cellphone, Hassan dials his own phone.

When Mohamed answers, "Hello," the room erupts in laughter, including the twins' 5-year-old brother Mahmoud, who shrieks in perfect English, "Oh my gosh!"

While Ahmed and Mohamed are getting stronger every day, perhaps the person most transformed by the family's living arrangement is Mahmoud: He is blossoming into the big brother he wants to be.

When his brothers were in the hospital, Mahmoud wanted to run down the hallways. He wanted to laugh and scream loudly. But his parents and staff members constantly curbed his 5-year-old tendencies, reminding him he was in a hospital.

Mahmoud likes having his brothers home "because I can play with them," he says. And in animated Arabic he describes an elaborate homecoming he has plotted for his brothers' return to Egypt.

"When I go to Egypt, when we go the village, they will wait until I go in and fix everything for them first. So I can surprise them," he says. He wants to run ahead to the family's home so he can prepare all the toys for them to see as the come in, he says.

"Because I am the big brother, I have to protect them," he says.

On a recent cloudy afternoon, Abu el-Wafa and Nurse Mahmoud load the boys into their strollers and take a walk around the apartment complex. Mahmoud, wearing black cowboy boots, pedals a metallic-orange bike alongside the strollers.

On the walk over, Mahmoud wheels the bike close to Mohamed, who grabs a handlebar. When Mohamed wails because he can't ride the bike, his mother is the first to offer comfort and wipe away the tears.

Abu el-Wafa cherishes these moments when she gets to be a mother. The most difficult thing for her is being separated from her 7-year-old daughter, Asmaa, who is in her grandparents' care in Egypt. She speaks to her for about 30 minutes at least once a week, but she still feels she has left a piece of herself behind.

And soon, Mahmoud, too, will return to Egypt to begin school.

For her husband, it's more difficult to be the father he wants to be. In Egypt, he would be working to feed, clothe and put a roof over his children's heads. A taxi driver back home, he does not have work authorization in the United States.

Every day "is getting harder, because every day is the same thing," Ibrahim says. He can't drive here, and besides Hassan's company and Friday visits to a mosque for worship, he's "just sitting home" waiting for the boys' reconstruction surgery, which doctors have not scheduled.

Then there are the repeated requests from media for interviews about his children.

"Everything in life has a good and a bad side," Ibrahim says. "The good thing about the media ... they let the people know the story about my kids."

In this way, people not only raised funds for the separation surgery, for which he remains grateful, but he also felt the prayers of the world, he says.

The hard part is the intrusion into his family's life, he says. "But as long as something good comes from it, I can live with it."

When the family returns to Egypt, they will face many changes. He is used to living in a village so small that everyone knows everyone else. But the boys need to be near state-of-the-art medical facilities.

"I have no choice other than living in Cairo," says Ibrahim. "I would love to live in my town with my family and everybody, but it's not fair to my kids. They need to be close to the hospital."

He knows he will struggle to get back on his feet financially. "I will do my best to find a job," he says.

In the meantime, how is he to provide for his family? The worry consumes him.

"The only thing I'm worried about is my kids' future," he says. "Whatever money I get - it's all going toward the kids."

Hassan is worried, too. His friend is a private man who does not ask for help, but Hassan has seen him lose weight with worries about his family. So Hassan has organized a benefit golf tournament June 14 in McKinney to help the family upon its return to Egypt.

For now, the days in America tick slowly on.

Mornings, someone with the World Craniofacial Foundation, which is sponsoring the family here, drives the family to the hospital for the boys' therapy sessions. In the evenings, they go for walks and catch up on TV soaps.

Neurosurgeons say the boys are making steady progress, so there is no rush to reconstruct the skulls. As long as they wear their helmets, their brains are protected. And doctors expect that the boys will outgrow the vomiting issues they're dealing with.

The boys have gastrostomies, surgical openings from the outside of their abdomens into their stomachs, for feeding. Tonight, just before bedtime, the parents coax the boys into eating a few bites.

One evening, while their mother holds Ahmed, a towel wrapped around him in case of an accident, Ibrahim spoons rice pudding into his son's mouth.

When Ahmed tries to spit it out, his father says "No!"

Ahmed's eyes water as he struggles to keep the pudding in his stomach.

He only has a few bites before saying cheerfully, "All done." But his father brings in a jar of baby food - vegetables and pasta dinner - and makes him eat a little more.

When Nurse Mahmoud prepares to feed Mohamed, he immediately begins crying. He knows it will be hard to keep the food down.

Ibrahim frowns and scolds him in Arabic, making him swallow several bites before the boy begins crying again. His father takes Mohamed in his arms and tries to console him by asking in English, "How old are you?"

From his mother's lap, Ahmed answers, "Three?"

"How old are you?" Ibrahim asks Mohamed again.

Again, Ahmed responds, "Three?"

Finally, a little smile spreads across Mohamed's face.

Before putting the boy to bed, Ibrahim steps outside to sit on the curb for a while. There, under the stars and the lampposts, he holds his son close to him.

---

(c) 2004, The Dallas Morning News. Distributed by Knight Ridder/Tribune News Service.

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