Our 4-year-old who died in viral outbreak needed emergency care. Wanaque waited too long, parents say.

When their daughter was born with profound medical problems, Modeline Auguste and Ocroimy Dolcin said they decided they would never have another child. 

“We wanted to give her all our love,” Auguste said.

The parents said they always knew their daughter, who needed both a tracheostomy and a feeding tube to live, probably would not have a long life. 

But they never thought she would die just three weeks after her fourth birthday. 

Doracase Ephraime Dolcin is one of 10 children who died in the adenovirus outbreak that has swept through the pediatric unit at the Wanaque Nursing and Rehabilitation Center in Passaic County. Another 27 children have been infected. The state Health Department assigned a team to monitor Wanaque’s infection control practices and closed admissions to the facility.

In an interview at their East Orange apartment this week, her parents insisted that Wanaque’s decision to delay transferring their daughter to a hospital denied Doracase a chance at survival.

Legislature to look into outbreak that led to 10 deaths at pediatric facility

Auguste said during a visit on Sunday, Sept. 30, her daughter developed a fever that would rise and fall over the next few days. By Wednesday, Oct. 3, Doracase spiked a 102-degree temperature, the mother said the nurse told her.

“I said, send her to the hospital,” Auguste said, a Haitian native whose neighbor, Nidja Charles, translated for the couple. “They said they were waiting for the doctor.”

The next day, the nurse told her there was blood around Doracase’s trach. Her mother said she insisted that Wanaque take her to the emergency room. “They were still waiting for the doctor,” Auguste said.

“It was negligent,” Dolcin said.

By that evening, workers told her a blood test said she needed to go to the hospital, Auguste said. The parents said they didn’t yet know she had the adenovirus.

When the child arrived Friday night Oct. 5 at Saint Joseph’s Regional Medical Center in Paterson, the doctors told them she had pneumonia and a stomach infection, Auguste said. Doracase was sent to the intensive care unit.

“By Sunday, she was already gone,” Dolcin said, meaning she was unresponsive. “It was so quick.” 

 She died the next day, Oct. 8.

Wanaque did not respond to a request for comment.

The adenovirus is usually not fatal. It’s a respiratory illness that feels like the flu.

 But to children with anemic immune systems like Doracase, the virus is life-threatening.

Doracase Dolcin was suffering from an intermittent fever in the week leading up to her death, her parents say. (Photo courtesy of the family)
 

Doracase — named after a woman in the Bible who helped feed and clothe the poor — was delivered two months early because Auguste said she could not feel the baby moving inside of her. The doctors explained she wasn’t getting enough oxygen.

She was born Sept. 16, 2014, at Saint Barnabas Medical Center in Livingston, where the parents said they were taught how to take care of an infant with such profound feeding and breathing problems.

“They were good. They loved that baby so much,” Auguste said of the Barnabas staff.

 Doracase lived at home for only three months, said Dolcin, 41, who works at a warehouse loading trucks, and Auguste, a 40-year-old certified nursing assistant. She underwent brain surgery at University Hospital in Newark at age 2.

The state Health Department decides whether babies as ill as Doracase need around-the-clock skilled nursing care, which is paid for by the Medicaid system. There are four such facilities in New Jersey, and where a child ends up is usually based on closest available bed to the family. 

The couple said their daughter spent time at Children’s Specialized Hospital in New Brunswick and in another skilled nursing facility in South Jersey, and complimented the care their child received there. But they requested a location closer to home. The state transferred their toddler to Wanaque about two years ago, they said.

The couple said they would visit multiple times a week, separately or together,  and usually on the same days. But when they visited on a different day, on several occasions they found their daughter in a dirty diaper, with feces visible on her body. 

“She was dirty with poop. Even the chair was dirty,” Auguste said. 

“When they don’t know you are coming, the baby was always dirty,” Dolcin said.

The parents complained, but Dolcin said he sometimes discouraged his wife from speaking up. He was afraid if they complained too often, his daughter’s care would suffer.

“I would go and bathe her. I told them, when I am here, you don’t have to do nothing — I’m good. “I washed her clothes. Shampoo, soap and towels — everything I buy. I wanted nothing from Wanaque,” Auguste said.

“The  baby was always smiling, laughing. She knew my voice,” she said.

The couple’s home is crowded with a basinet, a pack-and-play and stacks of photos of Doracase, some of her dressed in a princess gown and a tiara for her birthday.

Dolcin said he doesn’t understand why the employees — some of them themselves parents — lacked the “compassion” to send her to the hospital at the first sign of trouble. Wouldn’t they want the same for their own child? he asked.

 With his only child gone, he said he hopes state officials come to the same conclusion he and his wife have.

“That place should close.”

Do you have a family member on the pediatric unit at the Wanaque Center for Nursing and Rehabilitation, or a child who has been affected by the viral outbreak there? NJ.com would like to hear from you. You may reach us at (732) 902-4559, or write to Susan Livio at slivio@njadvancemedia.com, Spencer Kent at skent@njadvancemedia.com, or Ted Sherman at tsherman@njadvancemedia.com.

Research Editor Vinessa Erminio contributed to this report.

Susan K. Livio may be reached at slivio@njadvancemedia.com. Follow her on Twitter @SusanKLivio. Find NJ.com Politics on Facebook. 

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