California foster father takes in only terminally ill children

LOS ANGELES – The children were going to die.

Mohamed Bzeek knew that. But in his more than two decades as a foster father, he took them in anyway – the sickest of the sick in Los Angeles County’s sprawling foster care system.

He has buried about 10 children. Some died in his arms.

Now, Bzeek spends long days and sleepless nights caring for a bedridden 6-year-old foster girl with a rare brain defect. She’s blind and deaf. She has daily seizures. Her arms and legs are paralyzed.

Bzeek, a quiet, devout Libyan-born Muslim who lives in Azusa, California, just wants her to know she’s not alone in this life.

“I know she can’t hear, can’t see, but I always talk to her,” he said. “I’m always holding her, playing with her, touching her … She has feelings. She has a soul. She’s a human being.”

Of the 35,000 children monitored by the county’s Department of Children and Family Services, there are about 600 children at any given time who fall under the care of the department’s Medical Case Management Services, which serves those with the most severe medical needs, said Rosella Yousef, an assistant regional administrator for the unit.

There is a dire need for foster parents to care for such children.

And there is only one person like Bzeek.

“If anyone ever calls us and says, ‘This kid needs to go home on hospice,’ there’s only one name we think of,” said Melissa Testerman, a DCFS intake coordinator who finds placements for sick children. “He’s the only one that would take a child who would possibly not make it.”

Typically, she said, children with complex conditions are placed in medical facilities or with nurses who have opted to become foster parents.

But Bzeek is the only foster parent in the county known to take in terminally ill children, Yousef said. Though she knows the single father is stretched thin caring for the girl, who requires around-the-clock care, Yousef still approached him at a department Christmas party in December and asked if he could possibly take in another sick child.

This time, Bzeek politely declined.

Began fostering in 1989

The girl sits propped up with pillows in the corner of Bzeek’s living room couch. She has long, thin brown hair pulled into a ponytail and perfectly arched eyebrows over unseeing gray eyes.

Because of confidentiality laws, the girl is not being identified. But a special court order allowed the Los Angeles Times to spend time at Bzeek’s home and to interview people involved in his foster daughter’s case.

The girl’s head is too small for her 34-pound body, which is too small for her age. She was born with an encephalocele, a rare malformation in which part of her brain protruded through an opening in her skull, according to Dr. Suzanne Roberts, the girl’s pediatrician at Children’s Hospital Los Angeles. Neurosurgeons removed the protruding brain tissue shortly after her birth, but much of her brain remains undeveloped.

She has been in Bzeek’s care since she was a month old. Before her, he cared for three other children with the same condition.

“These kids, it’s a life sentence for them,” he said.

Bzeek, 62, is a portly man with a long, dark beard and a soft voice. The oldest of 10 children, he came to this country from Libya as a college student in 1978.

Years later, through a mutual friend, he met a woman named Dawn, who would become his wife. She had become a foster parent in the early 1980s, before she met Bzeek. Her grandparents had been foster parents, and she was inspired by them, Bzeek said. Before she met Bzeek, she opened her home as an emergency shelter for foster children who needed immediate placement or who were placed in protective custody.

Dawn Bzeek fell in love with every child she took in. She took them to professional holiday photo sessions, and she organized Christmas gift donation drives for foster children.

She was funny, Bzeek said during a recent drive home from the hospital. She was absolutely terrified of spiders and bugs, so much that even Halloween decorations creeped her out – but she was never scared by the children’s illnesses or the possibility that she would die, Bzeek said.

The Bzeeks opened their Azusa home to dozens of children. They taught classes on foster parenting – and how to handle a child’s illness and death – at community colleges. Dawn Bzeek was such a highly regarded foster mother that her name appeared on statewide task forces for improving foster care alongside doctors and policymakers.

Bzeek started caring for foster children with Dawn in 1989, he said. Often, the children were ill.

Mohamed Bzeek first experienced the death of a foster child in 1991. She was the child of a farm worker who was pregnant when she breathed in toxic pesticides sprayed by crop dusters. She was born with a spinal disorder, wore a full body cast and wasn’t yet a year old when she died on July 4, 1991, as the Bzeeks prepared dinner.

“This one hurt me so badly when she died,” Bzeek said, glancing at a photograph of a tiny girl in a frilly white dress, lying in a coffin surrounded by yellow flowers.

By the mid-1990s, the Bzeeks decided to specifically care for terminally ill children who had do-not-resuscitate orders because no one else would take them in.

There was the boy with short-gut syndrome who was admitted to the hospital 167 times in his eight-year life. He could never eat solid food, but the Bzeeks would sit him at the dinner table, with his own empty plate and spoon, so he could sit with them as a family.

There was the girl with the same brain condition as Bzeek’s current foster daughter, who lived for eight days after they brought her home. She was so tiny that when she died a doll maker made an outfit for her funeral. Bzeek carried her coffin in his hands like a shoebox.

“The key is, you have to love them like your own,” Bzeek said recently. “I know they are sick. I know they are going to die. I do my best as a human being and leave the rest to God.”

Bzeek’s only biological son, Adam, was born in 1997 – with brittle bone disease and dwarfism. He was a child so fragile that changing his diaper or his socks could break his bones.

Bzeek said he was never angry about his own son’s disabilities. He loved him all the same.

“That’s the way God created him,” Bzeek said.

Now 19, Adam weighs about 65 pounds and has big brown eyes and a shy grin. When at home, he gets around the house on a body skateboard that his father made for him out of a miniature ironing board, zooming across the wood floor, steering with his hands.

Adam studies computer science at Citrus College, driving his electric wheelchair to class. He’s the smallest student in class, Bzeek said, “but he’s a fighter.”

Adam’s parents never glossed over how sick his foster siblings were, and they told him the children were going to die eventually, Bzeek said. They accepted death as part of life – something that made the small joys of living all the more meaningful.

“I love my sister,” the shy teenager said of the foster girl. “Nobody should have to go through so much pain.”

About 2000, Dawn Bzeek, once such an active advocate for foster children, became ill. She suffered from powerful seizures that would leave her weak for days. She could hardly leave the house because she didn’t want to collapse in public.

The frustrations of her illness wore on her, Bzeek said. There was stress in the marriage, and she and Bzeek split in 2013. She died a little over a year later.

Bzeek chokes up when he talks about her. When it came to facing the difficulties of the children’s illnesses, the knowledge that they would die, she was always the stronger one, he said.

Hospital a second home

On a chilly November morning, Bzeek pushed the girl’s wheelchair and the IV pole that carries her feeding formula into Children’s Hospital on Sunset Boulevard. She was wrapped in a soft pink blanket, her head resting on a pillow with the stitched words: “Dad is like duct tape holding our home together.”

The temperatures had been bouncing up and down that week, and the girl had a cold. Her brain cannot fully regulate her body temperature, so one leg was hot while the other was cold.

On the elevator, her face glowed bright red as she coughed, her throat filled with phlegm, screaming for air. People in the elevator looked away.

Bzeek rubbed her cheek playfully and held her hand, waving it playfully. “Heeeey, mama,” he cooed in her ear, calming her down.

For Bzeek, the hospital has become a second home. When he’s not here, he’s often on the phone with her many doctors, the insurers who fight over who’s paying for it all, the lawyers who represent her and her social workers. Any time they leave the house together, he carries a thick black binder filled with her medical records and pages of medications.

Still, Bzeek – who had to be licensed through the county to care for medically fragile children and receives about $1,700 a month for her care – is not able to make medical decisions for her.

Roberts, the pediatrician, entered the exam room, smiling at the girl’s frilly socks and brown dress with fall-colored leaves.

“There’s our princess,” the doctor said. “She’s in her pretty dress, as always.”

Roberts has known Bzeek for years and has seen many of his foster children. By the time this girl was age 2, Roberts said, doctors said there were no more interventions to improve her condition.

“Nobody ever wants to give up,” she said. “But we had run through the options.”

But the girl, who is hooked to feeding and medication tubes at least 22 hours a day, has lived as long as she has because of Bzeek, the doctor said.

“When she’s not sick and in a good mood, she’ll cry to be held,” Roberts said. “She’s not verbal, but she can make her needs known … Her life is not complete suffering. She has moments where she’s enjoying herself and she’s pretty content, and it’s all because of Mohamed.”

Other than trips to the hospital and Friday prayers at the mosque – when the day nurse watches her – Bzeek rarely leaves the house.

To avoid choking, the girl sleeps sitting up. Bzeek sleeps on a second couch next to hers. He doesn’t sleep much.

A sixth birthday

On a Saturday in early December, Bzeek, Adam and the girl’s nurse, Marilou Terry, had a celebratory lunch for the child’s sixth birthday. He invited her biological parents. They didn’t come.

Bzeek crouched in front of the girl – wearing a long, red-and-white dress and matching socks – and held her hands, clapping them together.

“Yay!” he said, cheerfully. “You are 6! 6! 6!”

Bzeek lit six birthday candles in a cheesecake and sat the girl on the kitchen table, holding the cake near her face so she could feel the warmth of the flames.

As they sang “Happy Birthday,” Bzeek leaned over her left shoulder, his beard gently brushing the side of her face. She smelled the smoke, and a small smile crossed her face.