January 23, 2005
THE NEEDIEST CASES
Dual Challenge: To Be Poor and Have a Very Sick Child
By KARI HASKELL, NY TIMES

When a child is born, parents can expect a certain amount of change to be inevitable: There are the diaper changings, the feeding schedules, the wide array of personal sacrifices.

But when the newborn has a chronic life-threatening illness, there are more changes than anyone bargained for. And when such dire illness afflicts a baby in a poor family, life doesn't just change, it all but unravels.

"Poverty, on top of illness, on top of worry and fear - all of these stresses are real," said Philip Coltoff, chief executive at the Children's Aid Society, one of the seven agencies supported by The New York Times Neediest Cases Fund.

In a poor family dealing with illness, financial pressures can take an almost limitless toll. They can hinder access to medical care. They can frustrate the search for housing that accommodates a disabled child's wheelchair or walker. And they add emotional stress to a situation that is already difficult to endure.

More than half a million children in New York suffer from one or more continuing physical, mental or developmental health problems, according to a national child welfare study by Oregon Health and Science University. And about 19 percent of those sick children live with families facing financial problems brought on by medical need.

The gravity of their plight underlines the importance of a resource that New York charities have drawn on for decades to help families in distress: The New York Times Neediest Cases Fund, whose annual fund-raising campaign concludes this month.

Emergency financial assistance can help save a sick child's life. Money from the Neediest Cases Fund pays for life-saving medications, or electric bills, when a child is dependent on machines that help with breathing or other vital functions.

For the parents, help from the fund can provide enough short-term relief to help them on their way to long-term stability.

The seven New York City charities supported by the fund often tap it to provide invaluable training for families. They learn how to cope and respond appropriately to their child. Training and education lead to better, more informed choices, improved home environments, and ultimately, a caring, stable household.

"These problems can be reduced, if not eliminated, by parents getting the proper education and feeling that they are being helped by others," Mr. Coltoff said.

Return to Responsibility

Children's Aid provided the training that Shaneen Martin, 42, of the Bronx, needed to end her dependency on drugs and regain full responsibility for her daughter, Kiondra, a 7-year-old who has cerebral palsy, spastic quadriplegia, a seizure disorder and asthma.

On Dec. 19, 2003, Kiondra, known as Kiki, officially left the Children's Aid Medical Foster Care program to move home with her mother.

"It was the happiest day of my entire life," Ms. Martin said as she fed pasta to Kiki, sitting in a highchair designed for quadriplegics. "It was finally over; I got her back."

Upon Kiki's arrival, Children's Aid helped Ms. Martin get the medical equipment she needed, including a hospital bed and a wheelchair.

The reunion closed the door on a five-year struggle with crack abuse.

Ms. Martin's addiction prompted a relative to call the Administration for Children's Services in November 1998. At the time, she lived in Hollis, Queens. One Friday night, three plainclothes officers knocked at her door. She was questioned. The officers searched for drugs. And then Kiki, who was 18 months old and still tiny after a premature birth, was gone.

Ms. Martin feared that Kiki's special needs would not be met in foster care. But in that respect, Ms. Martin said, she was lucky. Kiki's foster parents, Fannie and Jairo Calderon, received training from Children's Aid and treated Kiki as one of their own.

"Kiki has three parents," Ms. Martin said. "They love Kiki, they love me, and I love them."

Still, the fall of 1998 was a dark time in her life, she said. Children's Aid assigned a social worker and a nurse to Ms. Martin. She began a daily rehabilitation program, medical training and classes in being a parent. She sold her house in Hollis and paid her debts. "It was for the best," she said. "I had to get away from the people, places and things."

Ms. Martin, who was working as a home care attendant, never missed her weekly appointments with Kiki or with her daughter's doctors. The courts required that she finish her program of training before she could get Kiki back. Juggling her job, classes and Kiki's medical schedule, something had to give, she said: She stopped working outside her home and applied for public assistance.

But a life of disarray had been transformed to one of organization by the time Kiki returned.

The transition from long-term foster care was not entirely smooth, Ms. Martin said. Kiki's nights were restless, and there were seizures. At first they were 60 to 90 seconds long. Then, in July, Kiki was taken to the hospital after a grand mal seizure that lasted for 25 minutes.

"She turned blue," said Ms. Martin. "I stared thinking, 'Jesus, don't you take her away from me.' I was scared, but I didn't panic."

Now, as a precaution, Ms. Martin keeps suppositories for seizures on her night table. She keeps two in Kiki's room, one with Kiki's teacher at school and another in Kiki's book bag.

Medication is always on schedule. Medical appointments are firm. Sunday nights, Kiki's hair is washed and braided. Her clothes are pressed; and each morning, her book bag is packed with a day's worth of medicine.

Monday through Friday, Kiki wakes up by 5 a.m. and is fed, dressed and taken by wheelchair to the bus stop by 7. At special education classes in Public School 194 in the Bronx, Kiki receives four kinds of therapy: physical, occupational, vision and speech.

Medicaid pays for daily home attendants and a nurse. Now Ms. Martin's goal is be self-sufficient again. In February, with financial aid, she will begin nursing classes. But until she is a licensed nurse, Ms. Martin said, she still has to rely on $136 a month in public assistance, which pays for her part of rent on her subsidized apartment in the Bronx. She also receives $528 in Supplemental Security Income and $149 in food stamps.

Meanwhile, the expenses mount, and not simply because of her daughter's health problems. There is clothing, for example. "She is growing so fast - two inches in the last two months," Ms. Martin said.

To help, Maria Burgos, director of Children's Aid's Medical Foster Care program, recently sought $200 from the Neediest Cases for clothes.

At the same time, to keep Ms. Martin on track toward earning her degree, Ms. Burgos used $1,200 for a computer.

Recently Kiki had surgery to relax her muscles, and was able to take her first steps, with assistance.

"Every day is a blessing with her; every day, every single day," Ms. Martin said.

Doing Their Best

For some parents of the chronically ill, the challenges are not always apparent from birth. Shanton Brown, 42, of East New York, Brooklyn, said there was a time when her daughter Sabrina Golding seemed to be a healthy, energetic child.

But then came a Sunday evening in 2002, when Sabrina was 8. Ms. Brown took her three children, Sabrina, Adrian, and Shanice, as well as her infant granddaughter, Giani, to a night service at church.

While Sabrina was playing in the nursery, her head began to throb and she became nauseated. She sought out her mother, and lying in her lap, she began to convulse.

"I thought she was tired and then discovered she was vomiting," Ms. Brown said recently at the family's two-bedroom subsidized apartment in East New York.

Doctors concluded that Sabrina had suffered brain damage and had hydrocephalus, or water on the brain. To drain the fluid, a small plastic tube called a shunt was surgically implanted under her skin from the top of her brain down her neck and into her stomach. "My head was bald," Sabrina said. She recalled crying at the sight of herself in a mirror.

Since then, her hair has grown over her small scar, and her spirit has returned.

Yet her illness has brought some unpleasant, challenging realities, beyond braving some foul-tasting medications.

She still has seizures. "One time I lost my tooth," Sabrina said. "The pain was so bad, I couldn't get up from my knees."

There are also precautions. "You can't put anything in my mouth" during a seizure, she said.

Sabrina also cannot take a bath unattended, and at school a paraprofessional escorts her to class.

Like many children with special medical needs, Sabrina was not always able to attend school regularly, and she fell behind. To catch up, she attended summer programs, and now she is flourishing in special education.

Seeing her daughter happy has removed one source of stress for Ms. Brown. But in the past few years, she has had other issues in her family. Adrian, now 17, had a problem with truancy. Shanice, 14, had a learning disability, and there were hearings over the custody of her granddaughter Giani, now 3. All these matters and her own learning disability have kept her from working, Ms. Brown said. The family survives on $1,000 in Supplemental Security Income for both of her daughters.

During the most stressful times, Ms. Brown said, she felt as if her family was falling apart. But she was able to gather the pieces with help from the East New York Family Center, operated by the Brooklyn Bureau of Community Service, another of the charitable agencies supported by the Neediest Cases.

The family has been in counseling since November 2003. Adrian is now earning a high school equivalency diploma and has a job at a local store, while Shanice is thriving in special education at Public School 72 in Brooklyn.

Sonia Smith, program director of the East New York Family Center, said Ms. Brown had been overwhelmed. "We wanted to improve her environment and the family's sense of well-being," she said.

With $399 from the Neediest Cases, Ms. Smith bought a dining table for the family. It was a small enhancement, but one that provided a central place where the whole family can gather to communicate or confront the latest crisis.

"We are trying to do the best we can," said Ms. Brown. "We'll make it."

A Baby in a Coma

For young couples, taking care of a severely ill child can mean an abrupt end to a carefree existence.

Belkys Coronado, 22, of Queens, said that it seemed not so long ago that she and her boyfriend, Rafael Mejia, 29, were going to parties and vacationing in the Dominican Republic, where they have relatives.

"I had a normal life," she said, recalling the period when she was 19, happy and expecting.

But in January 2002, her eighth month of pregnancy, there were complications.

"I started bleeding," she said. At the hospital she was dismissed after a quick check for the baby's heartbeat, she said. A week later the feeling of life inside her stopped. She had an emergency Caesarean section and her son, Bryan, was delivered and revived. He was transferred to a hospital in Manhattan and was in a coma for 22 days before he opened his eyes.

From doctors, she received a staggering prognosis and some unfathomable advice before his discharge: "Don't get too attached," they said.

Bryan has brain damage and suffers from seizures. He has severe developmental delays and depends on an electric feeding tube for nourishment.

"I don't sleep much, maybe four, five hours," Ms. Coronado said. Around the clock, she and Mr. Mejia tend to Bryan. He has seizures about 10 times a day, and often vomits.

The lack of sleep has worn Ms. Coronado down. She is depressed and has migraines, one so fierce that she blacked out - a frightening situation for a mother caring for a fragile child.

On a recent Wednesday afternoon, Ms. Coronado was facing another crisis. The pharmacy was late again with an essential medication.

"They expected me to wait three days," she said. "How do they expect me to wait for Phenobarbital when my baby has brain damage?" she asked.

She and Mr. Mejia felt alone - until last March, when they learned about respite care offered at St. Mary's Hospital in Queens. Bryan stayed at the hospital for several months, allowing Ms. Coronado to gain a modicum of strength. Through the hospital, she has a weekly nurse and home attendant, paid for by Medicaid.

Providing constant care for Bryan has come at a price for the couple. They have been unable to work steadily, and without consistent income, they went through the $1,600 in their emergency savings account.

By October, they were three months behind in rent and Con Edison was threatening to suspend their service. Without electricity, the feeding machine that Bryan needs would stop, she said.

A social worker from St. Mary's Hospital referred them to the New Alternatives for Children, a beneficiary of the Federation of Protestant Welfare Agencies, one of the seven charities supported by the Neediest Cases.

A social worker, Desiree Grosvenor, approached another charity's fund for two months' rent; she drew on the Neediest Cases for the remaining $725, and for the $258.87 needed to pay the power bill. Ms. Grosvenor is also helping the family secure public assistance and receive food stamps.

"We were able to help stabilize them for a period and give them time to seek resources that they need," said Ms. Grosvenor.

The agency and St. Mary's are now trying to secure an evening nurse and find a suitable day program for Bryan. Once she knows her baby is safe, Ms. Coronado said, she wants to continue her studies and return to work.

"They are just so afraid for him and his care, it's their only priority," said Ms. Grosvenor. "We are working toward getting them back on track - so when the next crisis comes they are equipped to deal with it."