A breath of fresh air

By BARBARA SOFER

July 19, 2013

I'm waiting with nervous anticipation for Maria Aman, in the Alyn Orthopedic Hospital and Rehabilitation Center in Jerusalem.

Alyn is a wonderful place that will break your heart, Israel's only rehabilitation hospital for children and teens. These are youngsters who were born with daunting physical challenges, or who have experienced the trauma of home and automobile accidents, violence and war. They have neuromuscular disorders, brain and spine injuries, to name just a few of the so-called "conditions" that bring kids here. At Alyn, the staff and patients toil with patience, professionalism and persistence, to maximize the children's potential and then some.

Maria, originally from Gaza, will be late. Her father, Hamdi Aman, has forgotten something important at home in Umm el-Fahm, a city of 43,000 on a ridge overlooking Wadi Ara, and they had to go back to get it. The Amans will be accompanied by a film crew from Israel's Channel 10 that has been following their story. Senior TV journalist Smadar Peled has been with Maria at home and in the school where she writes with a computer using a laser beam on her forehead. Over the years, Maria has been the subject of a lot of international coverage, but today the foreign press is absent.

At last, she arrives, together with her Dad and younger brother. The hydraulic lift unloads her electric, hitech wheelchair onto the pavement.

Maria is a pretty, dark-haired girl with intelligent brown eyes. She's dressed in cotton-candy pink, with a flower pulling back her curly black hair. She looks ready for a party, even a friend's bat mitzva celebration. Her chin leans into the wheelchair control panel and she's off, rolling at such a high speed I have to jog to keep up with, entering the cool corridors of Alyn Hospital. Hamdi, used to her pace, is wearing jeans and white sneakers. He's constantly by her side.

Maria knows where she's going. She spent four years at Alyn, learning to speak while using a breathing tube, learning to make the wheelchair work for her, and how to use other tools for the physically challenged. She visits all her favorite people. Children and therapists are having a food fest in a large room – but not just lunch, turning watermelons into sailing ships with fruit-laden sails.

Maria circulates, gathering happy hellos and hugs from former therapists and patients, switching back and forth between fluent Hebrew and Arabic.

She's a celebrity returning home, and everyone seems to know this is her big day. Friends, fellow students from the Bilingual School in Jerusalem, have come to see her, catch up on class news about bar and bat mitzva season, and wish her well. She started first grade with them when she was six, one of the more than 500 Jewish and Arab children at the capital's Max Rayne Hand in Hand School. She was the only pupil who couldn't use her hands.

Maria was 4½ when she got caught up in regional warfare. Her grandmother, mother and brother were killed. Maria's spine was severed.

Rushed to Israel for lifesaving treatment immediately after her devastating injury, she has been here ever since, with her father and younger brother. They have won permission to remain in Israel because of Maria's special medical needs. Her spinal cord was severed near the top, above the nerves that control breathing. She could only breathe through her trachea with the help of a mechanical ventilator, and is paralyzed from the neck down.

But Maria is spunky and outgoing, a little girl with an indomitable spirit.

At the Hand and Hand School, donors provided tutoring, transportation and special equipment so that she could keep up with her classmates. She now attends a school for special needs near Umm el-Fahm. The Israeli government supports her care and provides an aide; she belongs to an Israeli health fund.

When Maria was finally able to leave the hospital, Alyn staff connected her father with a family in Umm el-Fahm that was experienced in taking care of their own disabled child, so they could get practical and emotional support.

Maria's father is hoping to move back to Jerusalem, which they liked better than village life.

In the meantime, they returned to the capital last month so that Hadassah University Medical Center cardiothoracic surgeon Uzi Izhar could implant a breathing pacemaker in Maria's diaphragm.

In normal breathing, Dr. Izhar explains, the brain sends a message to the phrenic nerves that send the signal on to the diaphragm, the muscle that makes the lungs contract and expand. But with an injury like Maria's, the signal never gets there. Dr.

Izhar attached small wires, like those connecting an earphone to an iPhone, to the phrenic nerves, then attached an electrode about the size of the face of a child's watch under the skin. Stickon round antennas are patched on the outside. Radio waves are sent from a black box that looks like a small DVD player.

With the flip of a switch, the radio waves become stimulating pulses headed to the phrenic nerves, and the lungs respond.

Alyn's Dr. Eliezer Be'eri, who heads respiratory rehabilitation, hands over the black box to Hamdi. There's a right and left switch. Always start with the left, he says. Hamdi borrows a bottle of nail polish from TV's Peled, to mark the dials so he won't mess up.

Trial run.

The laughter and chatter are gone.

Maria's forehead turns damp with concentration and anxiety. Silence in the room, which has filled with doctors, administrators and the camera crew.

"Slowly," says Dr. Izhar. "Her diaphragm hasn't worked for seven years."

Her dad hovers over her. First the left side. There's a buzz and a beep. Maria gasps for air.

"Look," says Dr. Izhar. "She's breathing."

Maria's chest rises and falls. Now the right side is turned on, too. Her belly seems to move along with her chest. A quick glance at the box shows that the saturation is perfect. Smiles. Tears.

No more going to school with a breathing tube that needs constant monitoring. Her speech, though clear and soft before, will become more natural as she breathes on her own.

Says Dr. Izhar, "There are operations you do that give satisfaction, because they are complicated and you've managed to do them well. Others, like this one, give an immediate upgrade in a patient's life.

For me, it was very emotional to watch her begin to breathe."

And for 12-year old Maria, her face alight with joy, the result was immediate and specific: "I can breathe! And I can smell! I can even smell the perfume Daddy always buys for me."

The wonders of a breath of fresh air.