A new judge will decide if a Texas hospital can take a 10-month-old girl born with an ‘irreversible’ heart condition off of life support, despite her family’s opposition.
Tinslee Lewis, who suffers from a rare heart defect called Ebstein’s anomaly, has never left Cook Children’s Medical Center in Fort Worth, where she was born prematurely.
She’s spent her entire short life on a ventilator that breathes for her and with a feeding tube pumping nutrients into her tiny stomach.
Cook Children’s intended to turn off Tinslee’s life-sustaining machinery in November, in accordance with a Texas law that gives them the authority to do so.
However, her family filed a temporary restraining order, which was granted.
The order was set to expire on Tuesday but the judge was removed from the case after questions of his possible bias arose such as speaking at an event hosted by a group that opposes the law allowing the hospital to turn off life support.
A new hearing on the family’s request for a temporary injunction will now be held at 9am on Thursday in Fort Worth.
Tinslee Lewis, 10 months (pictured), was born prematurely with a rare heart defect called Ebstein’s anomaly, chronic lung disease and pulmonary hypertension
Doctors say they have to keep her sedated to stop her ripping out tubes. Cook Children’s says that Tinslee’s alert appearance may be a sign that she’s in pain as sedative drugs wear off. Pictured, Tinslee: with her mother, left, and right
Cook Children’s says Tinslee’s treatment is only making her suffer more and that her alert appearance may be a sign that she’s in pain as sedatives and paralyzing drugs wear off.
‘We would love nothing more than to be able to make her better and walk her out of here,’ said hospital spokeswoman Wini King.
‘But there comes a point, there comes a time when we have to say: “We can’t do any more, it’s not making it any better.”‘
Doctors had planned to remove Tinslee from life support on November 10 after invoking Texas’s ’10-day rule,’ which can be employed when a family disagrees with doctors who say life-sustaining treatment should be stopped.
The law stipulates if the hospital’s ethics committee agrees with doctors, treatment can be withdrawn after 10 days if a new provider can’t be found to take the patient.
Judge Alex Kim, who issued the temporary restraining order, was removed from the case on December 4 after the hospital filed a motion questioning his impartiality and how he’d gotten the case.
Cook Children’s said that after taking the case, Kim spoke about it at an event hosted by a group that opposes the ’10-day rule.’
The hospital also said Kim bypassed the rules regarding random assignment when he designated himself to oversee the case.
A Texas law gives the hospital the right withdraw treatment if they think a patient is terminal and give the family 10 days to transfer them. Tinslee’s family filed a temporary restraining order, which was granted, extending her life until December 10 . Pictured, left and right: Tinslee with her mother, Trinity
Tinslee’s rare, primary birth defect, Ebstein’s anomaly, has left her with a heart valve that doesn’t work properly. As a result, some of the blood that should circulate in one direction through the organ leaks back in the opposite direction.
A defect in that valve causes the rest of the heart’s chambers and valves to stretch and contort as it tries to adjust to the disordered blood flow.
About one in 10,000 babies in the US have the condition, but what’s mild and comes with few complications in some children is devastating to others.
Tinslee has undergone several extensive operations to fix her heart, but the Cook Children’s doctors say her heart function isn’t getting better.
Her condition is complicated by chronic lung disease – likely a result of her premature birth, though it’s unclear just how early the little girl was born – and pulmonary hypertension, a condition marked by abnormally constricted arteries in her lungs.
Cook Children’s claims it’s contacted nearly 20 other hospitals about Tinslee, but that they’ve all agreed her condition is irreversible and to keep her alive would be cruel
However, the judge was removed from the case after question rose about his bias and a new hearing on whether Cook Children’s. Pictured: Tinslee’s mother, Trinity
A 2007 study of 27 infant patients at an Oklahoma hospital with Ebstein’s anomaly and related disorders (including, in some patients’ cases, similar additional health problems to Tinslee’s) found that, with surgery, 74 percent survived the their hospital stays, and all of those survivors were still alive five years later.
But having had surgery, Tinslee’s physicians felt she was never going to make it out of the hospital alive.
So they enacted the Texas Advance Directives Act, a bill signed into law 1999 when former President George W Bush was then Governor Bush.
The law was meant to create a protocol for what to do when the wishes of patients or their families clashed with medical advice.
In most cases, this means the doctors believe it’s time to withdraw life support, just as is the case for Tinslee.
Once that decision is made, the clock starts running, and the patient and their family have 10 days to find a hospital that will accept the patient’s transfer.
That clock started ticking for the Lewis family on October 31.
Cook Children’s helped Tinslee’s family reach out to nearly 20 hospitals, its spokesperson said, including:
Children’s Memorial Hermann
Medical City Dallas
Children’s Medical Center Oklahoma City
Children’s Hospital of Atlanta
St. Louis Children’s
Children’s Hospital of Philadelphia
Methodist Hospital San Antonio
University Hospital San Antonio
Children’s Hospital of Los Angeles
CS Mott Children’s Michigan
LeBonheur Children’s Memphis
Children’s Hospital San Antoni CHRISTUS
Tinslee has undergone several extensive operations to fix her heart, but the Cook Children’s doctors say her heart function isn’t getting better
But those facilities all took the same stance that Cook Children’s has.
Kimberlyn Schwartz, a spokeswoman for Texas Right to Life, an anti-abortion group, says her group has also been reaching out to facilities and they have hope one will be found, but they need more time.
‘We’re still looking and feeling out new hospitals,’ Schwartz said.
The case has become a rallying point for Republicans in recent weeks.
At a news conference with Tinslee’s family, GOP state Rep Tan Parker said the law ‘doesn’t fit with Texas values.’
And Texas Attorney General Ken Paxton has also stated his opposition to the law.
But supporters of the 20-year-old law include Texas Alliance for Life, a group that opposes abortion except to save the mother’s life and also opposes euthanasia. Joe Pojman, the group’s executive director, has said the law balances the family’s autonomy with doctors’ rights not to give interventions that cause harm or suffering.
Usually, according to experts, doctors and families can come to an agreement without the issue going to a committee.
Though Texas is one of only a handful of states with such a law, experts said the same process basically occurs in other states that don’t have specific legislation. In those states, the hospital would just assess the legal risk of getting sued before proceeding.