No Goodbye

March 16, 2008 permalink

In the story of the late Chelsey Cruz, the Hartford Courant illustrates a form of cruelty of the child protection system. Parents are forcibly kept away from their terminally ill children. In the Howard case in Massachusetts, social workers even refused the bereaved parents time alone with the body of their dead daughter. What were they protecting?

expand

collapse

Mother's Rage Lives On

A 15-Year-Old East Hartford Girl With Lupus Dies, And The State Offers Its Sympathy To The Family, While Defending Its Role In The Wrenching Case

By HILARY WALDMAN | Courant Staff Writer

March 15, 2008

When Kimberly Castro buries her only daughter next week, she'll do so with a clear conscience, but with fury in her heart.

The state, she said, robbed her of precious time with her child, simply because she wanted control over the girl's treatment for lupus.

"I'm angry; I'm enraged right now," said Castro, surrounded by her family in her father's East Hartford home as she made funeral arrangements for her 15-year-old, Chelsey Cruz.

"Even if lupus would kill her, why take her away from me and not let me spend the last days with my child?" Castro said through tears Friday. "They ripped her away from me. I was the best mother to my daughter."

The state Department of Children and Families expressed sympathy for the family but defended its procedures in the case. DCF charged Castro with medical neglect and took custody of Chelsey last August after Castro disagreed with three teams of doctors about how best to treat the girl's lupus. While Castro said the strong medications prescribed by doctors were hurting Chelsey, the doctors said they were her best chance to survive.

When the girl died unexpectedly Tuesday in the emergency room at Connecticut Children's Medical Center in Hartford, she was in the temporary custody of her grandfather. The family was awaiting a ruling from a family court judge about whether the girl could go home.

In a letter to the judge dated Feb. 1, Chelsey, an honors student at Capital Prep Magnet School in Hartford, wrote about the "horrifying side effects " of her medication and said her parents were being "penalized" for supporting her desire to try alternative treatment.

"I have already tried what the doctors consider to be the standard of care for the past five years. I have experienced the horrifying side effects of them and realized that they have not helped me in any way. In fact, I feel I have gotten worse and now require dialysis," Chelsey wrote. "In light of this, I no longer want to use them."

"I would also like to be back with my mom and brothers without any interference from any agency," she wrote.

Although it will not change anything, Castro said she would still like to get a ruling. DCF officials said in a prepared statement Friday that they were still unsure of how the case would end, in light of Chelsey's death.

"Department staff worked diligently to support the family and to ensure that the child's medical needs were met," DCF said. "The same staff sought to have mother engage necessary treatments for the girl that were recommended by doctors from three major hospitals. Our staff feel a great loss from the child's passing and deeply regret the pain experienced by her family."

Although Castro objected to her daughter's recommended treatment almost since the girl was diagnosed with lupus six years ago, the conflict came to a head last summer when Chelsey was hospitalized at Children's Hospital Boston.

Her kidneys had failed, and she was on dialysis. Doctors who previously had treated her at Connecticut Children's Medical Center and Yale- New Haven Children's Hospital said lupus, a disease in which the immune system goes awry and attacks the body's healthy organs, caused the damage.

They thought her best chance would come from two powerful chemotherapy drugs — Cytoxan and Cellcept — but Castro felt the medications were destroying Chelsey's kidneys. She fired the Connecticut doctors, who filed complaints against her. Eventually, Castro agreed to seek care in Boston.

There, Dr. William Harmon, director of pediatric nephrology and a renowned expert in kidney transplant for children, recommended that Chelsey continue on Cellcept. In court papers, he said he hoped to bring the lupus under control with the medication, then prepare Chelsey for a kidney transplant.

But Castro said the side effects from the medication were too much. Chelsey suffered with chronic intestinal distress and regular infections. Castro said the medication was doing more harm than good and ordered the doctors to stop.

In August, Harmon called in Massachusetts child welfare authorities, accusing Castro of medical neglect. He had a uniformed guard posted outside of Chelsey's hospital room to prevent Castro's possibly taking her daughter out of the hospital.

In October, when Chelsey was well enough to go home, the case was transferred to the Connecticut Department of Children and Families, and Chelsey was placed in the custody of her grandfather, who agreed to follow the doctor's orders. A hearing was called to reach a final decision. On Feb. 4, the trial wrapped up in Superior Court in Hartford.

Castro last saw her daughter Monday evening, during a supervised visit at Castro's father's house. She said Chelsey had been bothered by vomiting and diarrhea and was taking antibiotics for an infection.

After Castro returned home that evening, Chelsey cellphoned her mother many times during the night, crying because she was so sick.

The next morning, Chelsey's grandfather rushed her to the hospital. By the time Castro arrived, emergency room workers were trying to revive the girl.

Castro never saw her alive again.

"When I got there they were working on her," Castro said. She said she is not sure whether she will pursue further legal action.

"What does it really matter?" said an exhausted Castro Friday. "None of it is going to bring my daughter back."

Castro said doctors at the hospital told her that Chelsey died of heart failure caused by sepsis, an overwhelming infection that can attack the body's organs very quickly. But an autopsy report concluded that she died of kidney failure and lupus, according to the Office of the Chief Medical Examiner.

A funeral for Chelsey Cruz is scheduled for Tuesday at 10 a.m. at the Newkirk and Whitney Funeral Home in East Hartford. At Castro's request, the state Department of Children and Families is footing the bill.

"They owe it to Chelsey to pay for everything because the time she had left, they took away," Castro said. "I told [DCF] that this would happen. I warned them.

"And they never listened."

Castro said she will never believe that her daughter died of lupus or kidney failure. "I'm 100 percent sure that my daughter died of adverse side effects of the drug called Cellcept," Castro said. "Regardless of that, they had no right to force her to take a drug she didn't want."

Contact Hilary Waldman at hwaldman@courant.com.

Source: The Hartford Courant