Bringing up baby

Every time little Rukia Burgel cries at night, a different person comes to soothe her. That person is neither her mother nor her father, but hospital nurses, male and female. They are angels in white and green scrubs who calm her down, ease her pain, make her laugh and give her a hug when they can.

She has been here since she was 10 days old, in the intensive care unit of Edmond and Lily Safra Children’s Hospital at the Sheba Medical Center at Tel Hashomer. She arrived in grave danger with a birth defect in her heart, and was hooked up to a respirator. Only today, at the age of 2 years and four months, does Rukia breathe on her own for a few hours a day. Her world begins and ends inside three white walls and one glass wall that faces the nurses’ station. The playpen, which is made of metal, features little scratch marks – reminders of the time when Rukia was teething and tried to bite the bars to ease the pain.

Rukia was born in Nablus to Mohammed and Nibeen Burgel. Since birth, she has suffered from a heart defect that prevented her airway from developing normally. After her birth, Rukia was sent to the hospital for life-saving surgery, but in the end she remained dependent on a respirator to survive. She has been here since – for two years and four months – in Room 7. The 10 staff members, who for all intents and purposes have raised her, are always there for her, at all hours of the day and night. They lift her from her bed when she wakes up crying, sometimes caress her and sing her a comforting song, change her diaper and take care of the respirator. She has many fathers and mothers, because her actual parents are not here very often.

During the first months of Rukia’s life, when she lay unconscious, her father, Mohammed, stayed to sleep in the hospital’s parents’ room every night. Today, he comes from Nablus three times a week. He has an entry permit into Israel that he needs to renew once a month, and to arrive by 10 a.m., he passes through the Qalqilya checkpoint at 6 a.m. and hitchhikes to the hospital. Sometimes he is delayed at the checkpoint, and sometimes at the hospital entrance. To return home at noon, he rides on the bus for laborers from the Palestinian territories. Rukia’s mother, Nibeen, whose youngest child, Wasfia, is a healthy 9-month-old girl, comes only rarely because of the distance and the difficulty in getting there. During her pregnancy, she hardly went to the hospital for fear of infection. They also have a 3-and-a-half-year-old son, Hamad.

In the room next door is a 3-month-old baby who suffers from a similar ailment and is also connected to a respirator. But he will be going home in coming days. If Rukia lived inside the Green Line, she too would have been able to return home long ago. But Nablus does not have the required medical equipment that could provide her with immediate treatment if her lungs were to collapse and she was unable to breathe on her own.

Against her will, she has become everybody’s baby. Every single doctor and nurse, without exception, showers her with love. “There’s something charming about this little girl, who has become part of everyone’s routine,” says the director of the department, Dr. Amir Vardi. “This is where she learned to turn over, to hold a pacifier, to sit and walk as she pushes furniture or the respirator. She has become part of our lives.” Last year, a play area was added to her room. It features a baby swing, a play mat, a toy walker and lots of stuffed animals that are arranged in a line along the windowsill. She has a long way to go before she can go home. In the meantime she is here, and nobody can say until when.

‘It is hard to leave your daughter’

It is Tuesday morning, the day Mohammed visits. He helps the nurses shower Rukia in a little basin (so as not to move the respirator), plays with her and sings to her. He arranges the respirator’s long pipe so that they can stroll around the room a little, practicing walking. He does not get angry when one of the nurses takes Rukia’s hand and walks to the nurses’ station with her. “It’s funny, but I don’t feel that she’s only my daughter,” he says in fluent Hebrew. “It’s hard to leave your daughter in a different, strange place, but I know that she’s in good hands. I know that every member of the staff loves her as if she were their own child. She’s not just a patient here. She lives here.”

Mohammed owns an auto dealership, and when Rukia was hospitalized, he took a break from work. “At first, we saw children who were here for a few days and we thought that she would leave quickly as well. We said that it would be a month or two at most. We never believed that it would be such a long time.” For nearly a year he sat with her as she lay connected to the respirator, unconscious, unmoving. “I left everything. I only wanted to be near her. Her mother and brother stayed in Nablus and couldn’t come to the hospital a lot because you’re not supposed to bring children here. Her brother, who was a year old then, didn’t understand what had happened. Here he’d been told that he had a sister, he saw her for a few days, and suddenly she’d vanished. He didn’t see her, didn’t play with her, didn’t understand what a sister was at all.”

After a long time in the hospital, the doctors told him to go home because the recovery process would be long. “It was very hard for me to think of leaving my daughter like that. But I understood that I had nothing to do here all day, that I had to keep on living a bit, for my family, for myself. They told me that they would take care of her. Volunteers from the First Embrace organization [which helps care for babies abandoned after birth] also came, so I knew that they would be with her all the time. I knew that they treated her as if she were their own child.”

He remembers the Thursday that a male nurse brought him from the hospital to the Qalqilya checkpoint very well. “He said that I had nothing to worry about, that they’d call me if anything happened. I went back home and felt strange. She was there and I was here, without her. My family needed me at home, and I wanted to be with Rukia, who needed me more than anybody. But I knew that I could do nothing there. At 8 o’clock on Monday morning they suddenly called me. They told me that she had woken up, opened her eyes and thrown away the respirator tube because it was uncomfortable for her. They told me to bring a little basket and toys. I ran out right away. Her mother and I were so excited.

“When I got to the hospital a few hours later, I almost cried. Suddenly my little girl, who had lain in bed until then without moving, was awake, looking around, smiling, responsive. I came and stayed beside her for three weeks. I couldn’t leave her even though they needed me at home. She was still dependent on the respirator, but she made a little more progress each time. She developed a bit late because of the disease, and it was very moving when she suddenly turned over or stretched out her hand or sat up. I have no words to describe the joy.”

After several weeks, Mohammed returned home and started going to the hospital every two days. “One day, I came into the department and the nurse grabbed me with excitement. 'Come look at your daughter!' she said. I went into the room and saw Rukia without the respirator, standing on her own, walking a few steps. The staff told me all the time, ‘Let time do its work,’ and thank God, time has done its work, and she’s holding her own, walking, sometimes even taking out the tube that bothers her.”

Hope on the horizon

Rukia’s congenital heart defect, which is called Tetralogy of Fallot, usually includes a narrowing of the pulmonary valve. While the defect itself is not rare, in Rukia’s case the pulmonary valve was missing, which led to increased blood flow to the lungs, causing breathing difficulties. “Even in utero, her main pulmonary artery was enlarged and pressed on her airway, so that it did not develop well,” says Dr. Vardi. “She underwent surgery to repair it, so that as far as the heart and blood vessels that come from it are concerned, she is all right. But her airways did not grow, so her left lung is small and does not work normally. That’s why she is dependent on a respirator.”

After the doctors realized that Rukia would need a respirator for a long time, she underwent a tracheotomy, because of which Rukia cannot speak. She communicates by making clicking noises and using other movements. At one stage, she was taken to the Schneider Children’s Hospital to have a stent implanted to enlarge her airway. “Such cooperation between two hospitals is unusual, but in Rukia’s case, it went well. She brings together not only Palestinians and Jews, but also two hospitals,” Vardi says with a smile.

While the stent improved Rukia’s condition, it did not free her completely from the respirator. Only when that happens, when she is able to breathe on her own, will she be able to go home to Nablus. Vardi hopes that this will happen within the next several months.

But he also fears that moment. “She could collapse there without anyone to take care of her. There is no appropriate infrastructure to bring the respirator to her home permanently. There are no medical specialists who can save her should her lungs collapse.”

The cardiac intensive-care unit is intended mostly for life-saving treatment of babies and children. From there, they go back home or are hospitalized in a ward. Rukia is the only one who lives here. “It’s amazing. It doesn’t matter what ethnic group or culture anybody comes from. When it comes to Rukia, all bets are off,” says the department’s head nurse, Najah Zayad. He is 51, from the Bedouin village of Ara, and the father of five children. He melts every time he sees Rukia, as though she were one of his own. “That’s how it is. Even if everyone's under pressure, when Rukia suddenly comes in with a smile, she’ll get her warm embrace. Look, yesterday was very busy. I had a lot of work to do, and suddenly Rukia came to me and sat on my lap. And even with all the pressure, I calmed down. I kept working with her sitting on my lap, making me laugh and giving a lot of love. It’s wonderful.”

“It’s not a game for us or for her. This is real love,” Najah continues. “Our profession is extremely difficult, and what keeps me working is this human element, the added value that this place gives to my heart. The moment we play with her, even if it’s the toughest possible day, she gives us strength. She knows it, and she gives everybody what he wants in order to make him happy.”

The department is not Rukia’s only protector. Her first hospitalization, during which she underwent surgery, was funded by the Peres Center for Peace and the Palestinian Authority. But the longer her treatment lasted, the more the hospital itself covered the cost of her hospitalization, in what was described as a “humanitarian gesture.”

‘She cries without making a sound’

Rukia sits on the lap of Shoshie Rabinowitz, a volunteer from First Embrace. Shoshie shows her a picture book about animals, tells her about dogs and cats. For two years she has been coming to visit her, twice a week, three hours each time. “It’s addictive,” she says, smiling, and Rukia hugs her like a child hugs her mother. “My whole family knows her. They want updates about her condition all the time: whether she was in a good mood today or not, whether her medical condition has improved. When I’m not with her, I miss her. It’s an emotional connection. Look what a sweet baby she is.”

This is a labor of love for you, I remark, and she is embarrassed. “It’s obvious. It’s part of my life. For me, the toughest part is when she cries, because she cries without making a sound. After all, crying is the way a baby communicates, a way to show that he’s unhappy, that something’s bothering him, and she can’t make a sound. So people just see on her face that she’s hurting. It hurts me, too.”

Rukia looks at me with her big eyes and smiles. She holds out her hands for me to take. I do so, and then I take her in my arms, and she starts to play with the sunglasses on my head. A sweet and curious baby. If she were not connected to so many tubes, one might make a mistake and think she was healthy. Najah arrives and she climbs into his arms, and immediately afterward she wants to come back to me.

Every member of the staff has taught her to communicate with him or her in a different way. For Dr. Vardi, she vibrates her lips. For Najah, she holds out her head so that he can hold his head against it in love. For another male nurse, she clicks her tongue. I cannot help but think about what she would say if she could speak. Would she say that she was tired of that room, of the white walls and the permanent view of the sky, and that she wants to go outside and play? Would she say that she cannot wait any longer to go home, to her parents? Or might she ask me to call one of the male nurses in the department to come and play with her and whisper to me secretly, so that nobody will hear, that she wants to stay here? After all, she grew up here. This is where she feels the most loved, most protected. She does not know how it feels to play in a playground with dozens of other kids. She has never splashed around in a pool, rolled around on the grass in the park or chased dogs in the garden. She is a child of the hospital.

Rukia has left the department only once. It happened several months ago, just before her second birthday. In coordination with her family and the security services, Najah arranged for a portable respirator and traveled with her by ambulance to the Qalqilya checkpoint, where she met her father. “He didn’t believe that we were really coming until I called him from the checkpoint,” Najah says, laughing. “He wasn’t even waiting for us at the checkpoint because he thought it was impossible that we’d come.” Rukia was taken to a Palestinian Authority ambulance and Najah went home with her. The family celebrated together for five hours. Her parents, brother, cousins and neighbors were very excited, but there was also anxiety about what would happen if something went wrong. Five hours of normalcy, and afterward she went back to Room 7 and hospital routine.

‘Halva is nothing’

Several weeks ago, Rukia came down with the flu. It is a fairly simple illness for ordinary babies to fight, but not for someone in her condition. Because of her illness, the flu made it even harder for her to breathe. The nurses cried with her and brought her toys to raise her spirits. On the windowsill, near the plastic dolls, they hung a handwritten sign that read, “Don’t give Rukia the animals. She eats them.”

When we sit down to talk, Rukia suddenly glances sideways and smiles. Shadi Hajj Yihye, a nurse, is making her laugh from the other side of the glass, and she stretches her hands toward him, waiting for the loving hug that she is used to receiving. “It’s very hard when someone else is with your child every day, but the people here warm my heart,” Mohammed says quietly. “They even told me that if they’re not near her for half an hour and she feels lonely, she pulls on the respirator tube so that the respirator will beep and she will get the attention she deserves.”

He doesn't know when Rukia will be released and allowed to go home, but he is afraid it will be too early. “My fear is that everything we accomplished here with her treatment will vanish in five minutes. In Nablus there is no lung specialist who can treat her. There is no intensive-care unit. In the pediatric departments they don’t allow the father to be with the child, only the mother. And her mother can’t be with her all the time because we have two other children at home. So it bothers me that I don’t see her every hour and every minute, and I miss her very much when I’m not with her. That’s how it is – a father’s heart. And her mother is going mad with longing. But I know that here, if anything happens, someone will treat her right away.”

The nurses have lunch and invite Mohammed to join them. Everybody talks about the excellent halva that he brought as a gift. “Halva is nothing,” he tells me quietly. “They give me much more than I can ever give them. They don’t owe me anything, and they give everything from the heart. Good people who love my child. For me, they are family. I only wish I could do more for them.”

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