A Mom, a Texas Law and a Baby’s Fate

For the last nine weeks, Daniel Cullen II has been kept alive by a feeding tube and a ventilator that softly thumps by his hospital crib.

Daniel’s mother, Dixie Belcher, says she believes the 10-month-old can recover from brain injuries sustained when he stopped breathing for several minutes in early April. But doctors at Children’s Medical Center in Dallas say the damage is irreversible and further treatment is pointless.

With Daniel’s mother and his doctors at an impasse, the hospital -- backed by the state’s futile-care law -- took steps that would lead to removal of Daniel’s life support without her consent.

But last week, lawyers for Belcher and the hospital agreed to extend a temporary restraining order that bars further action until the case is heard by a judge June 16.

“She’s grieving and in trauma and all of a sudden the people she thinks are helping her child are saying they’ll override her and terminate treatment,” said Belcher’s lawyer, Brian Potts, who is working to change a law that in certain circumstances gives healthcare facilities the right to end life support. “Most parents don’t know until they’re in this situation that the final decision may not be theirs to make.”

In most states, when doctors and families disagree about ending life support, they look at how other hospitals in the area would respond in similar situations, said Thomas Mayo, co-chairman of the ethics committee at Children’s Medical Center.

But Texas legislators chose to give more structure to what should happen, passing a statute in 1999 that spelled out what to do when such a dispute arises.

First, the hospital ethics committee reviews the case with doctors and family members. When the patient is an adult, the primary concern is what he or she would have wanted. But in the case of an infant, the focus is on the best interest of the child, not what the parents want, Mayo said.

If, after weighing the facts, the committee decides further treatment is futile, doctors can end life support after a 10-day waiting period.

During that time, the hospital is obligated to help the family look for a facility willing to continue treatment.

“If the parents’ choice is seen as being extreme enough and there’s no benefit to the child ... then that’s going to lead a physician to invoke the law and make a decision over the parents’ objection,” said Mayo, who helped write the statute.

The law was passed in part to aid decision-making during a difficult time. But for some families, it has “sharpened rather than made the disagreement go away,” Mayo said.

Cases in Houston and San Antonio similar to Belcher’s have in part prompted those who helped write the law to collect information on how it’s “playing out in the real world,” Mayo said.

The law will probably be refined when the Legislature convenes in January, he said.

The fine points of a Texas statute are of little interest to Belcher, who simply wants to keep Daniel breathing -- even if a machine does it for him, Potts said.

Daniel has had a precarious hold on life from the start. He weighed 2 pounds, 6 ounces, when he was born three months premature in July. After four months in the hospital, he was sent home with a breathing tube in his throat.

On April 4, Belcher said, she left Daniel alone in his crib while she was in the kitchen. When she returned to the baby’s room, she realized his breathing tube had come out, cutting off his oxygen supply.

Doctors later told her the damage to Daniel’s brain was complete, but she has contended the infant has opened his eyes and squeezed her finger.

“She believes he responds to her,” Potts said.

Belcher’s situation is complicated by allegations of child neglect. She has twice been investigated by the state’s Child Protective Services, though no action was taken against her.

A third allegation of neglect, made in January, influenced the decision by the state to take temporary custody of Daniel after his tracheal tube came out in April.

Daniel’s 8-year-old brother is also in temporary custody.

“Obviously we have some question as to what happened” when the tube dislodged, said Child Protective Services spokeswoman Marissa Gonzales. “Because he was so seriously injured we felt it was necessary to place him in temporary care.”

Belcher last visited Daniel on May 19, Gonzales said, and has been late or a no-show for several visits with her other son.

Detectives who searched Belcher’s apartment after Daniel was hospitalized last month reported that the cramped rooms were filthy and littered with dirty bottles and trash.

Daniel’s crib bedding was soiled, and cigarette butts in an ashtray suggested that the infant had been exposed to secondhand smoke.

“It certainly cannot be good for a baby born at 26 weeks who has to have” a tracheotomy tube, Officer Diana Paulsen wrote in her report.

Belcher has denied neglecting her children. Her determination to keep Daniel alive is linked to the death 14 years ago of an infant daughter, Potts said.

“She also died from breathing problems. Dixie has never really worked through that and doesn’t want the same thing to happen to Daniel,” Potts said. “Even though he may never have a normal sort of life, she thinks that as long as he’s breathing and she can keep him alive, she should try.”