Ziany Villafona was about six months pregnant when doctors said her child would be born with spina bifida, a birth defect that prevents the bones of the spine from completely closing.
Despite the doctor’s diagnosis, Villafona still had her doubts. “I couldn’t deal with it,” she said. “I was in complete denial. It wasn’t until the baby was born did I finally accept it.”
Villafona is one of many parents who must face the difficult task of dealing with a child who suffers from a life-threatening illness. About 50,000 children die annually in the U.S. and 500,000 cope with life-threatening illnesses.
In New Jersey, birth defects and cancer come in second as a major cause of death among children 1 to 4 years old, according to the New Jersey Department of Health. The number of children who died from birth defects jumped from about 4 percent in 2000 to nearly 13 percent in 2007.
Families are often faced with the overwhelming challenge of dealing with their child’s illness while also trying to get the best healthcare their child needs.
One program that offers help is the Circle of Life, a not-for-profit organization that currently operates out of University Hospital in Newark. The program offers care and family support for seriously ill and dying children and their families.
“We don’t limit our services to any group," said Norma Godin Millison, a nurse and the center’s executive director. “Anybody in a situation with a child who is seriously and terminally ill can benefit from having somebody walk alongside them and help them understand their child’s situation and help them with decision making and understanding the outcomes.”
The program primarily functions as a consultation service, working with healthcare agencies to arrange for nurses to visit patient’s homes, and helping families make end-of-life decisions during extremely stressful and confusing times.
Dr. James Oleske, the infectious disease specialist internationally known for his work with pediatric AIDS, along with Lynn Czarniecki, an advanced practice nurse, and Millison founded Circle of Life in 2002.
When Villafona was first referred to Circle of Life, she didn’t want help.
“I rejected the program,” she said. “But I admire their patience, because they never gave up on me. They helped me come to terms with the illness.”
With the help of therapists, nurses and Niamah G. Campbell-Jenkins, a social worker at Circle of Life, she was able to better understand her daughter’s illness and learn how to take care of her baby.
“When I took the baby home, I was surprised that Niamah made a home visit,” she said. “She helped me fill out that paper work so I can get a home nurse.”
Villafona’s baby, Johanna, now 10 months old, has had two operations. “She still has a long road ahead, but I’ve seen improvement,” said Villafona. “She mumbles now, something they never thought she could do. And her fist, which was always closed, can now open so she can grab things.”
For the past seven years, the Center has helped more than 500 children across 18 counties in New Jersey. They have helped children with rare genetic disorders and serious and rare forms of pediatric cancer and children with AIDS.
The program recently opened a new facility, named Magnolia House, located on the grounds of Saint Walburga's Monastery, in Elizabeth.
“This facility will get families outside of hospital walls,” said Millison. “We can offer opportunities for families to get together with other families for counseling, for meetings, for family events and activities.”
For Villafona, meeting other parents who were also struggling made her feel like she wasn’t alone.
“I wasn’t the only person dealing with this,” she said. “The program even helped me explain Johanna’s illness to my five-year-old son, Isaac.”