A Texas court has temporarily blocked a hospital in Fort Worth from taking a nine-month-old baby girl born with an ‘irreversible’ heart condition off life support.
Tinslee Lewis has never left Cook Children’s Medical Center, where she was born premature and suffering from a rare heart defect called Ebstein’s anomaly.
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.
On October 31, the hospital notified Tinslee’s family that it intended to remove all of that life life-sustaining machinery, against their wishes.
A Texas law gives hospitals there the authority to withdraw life-support if a patient falls into ‘irreversible condition’ and a suitable facility to transfer them to can’t be found within 10 days.
Cook Children’s has said in a statement that it has reached out to nearly 20 hospitals across the country on behalf of Tinslee and her family, but none them have agreed to take the baby girl.
Tinslee’s mother, Trinity, is begging for an extension so she has just a little more time to find a hospital that will keep her daughter on life support – but Tinslee’s doctor’s say the tiny baby girl is suffering and ‘will never get better or be cured,’ according to Fox.
Tinslee Lewis has never left the hospital where she was born premature in the nine months of her life and has been sustained by a ventilator and feeding tube. Herfamily wants to keep giving the little girl a chance to fight, but Cook Children’s Medical Center says she’s suffering
Tinslee was born premature and, in addition to her rare heart defect, suffers common problems of preemies, like lung issues. Doctors say they have to keep her sedated to stop her ripping out tubes (picture, left: with Trinity holding and kissing her). Cook Children’s says that Tinslee’s alert appearance (right) may be a sign that she’s in pain as sedative drugs wear off
‘I just don’t think that what they’re doing to my baby is [right], because she’s not brain dead,’ Lewis told CBS DFW.
‘She’s there. And she has overcome so much I know she’ll be OK this time.’
In photos, Tinslee looks at the camera or around the room. In some, her lids look a little heavy, as if she’s sleepy. In other images, the baby girl looks a little stunned, like the camera flash came as a surprise, or a rattle is being shaken to get her attention.
But, according to the staff at Cook Children’s, her sweet expressive face masks a very sick body.
Tinslee hasn’t been off a ventilator since July. A feeding tube is ever-present in her nostrils.
‘To maintain the delicate balance necessary to sustain Tinslee’s life, and to prevent her from pulling out the lines that are connected to the ventilator, doctors have had to keep her constantly paralyzed and sedated,’ the hospital said in a statement.
Trinity (right), Tinslee’s mother, says her daughter isn’t brain dead and has been ‘ok’ through each setback – and believes she will be this time too
‘While Tinslee may sometimes appear alert and moving, her movements are the result of being weaned off of the paralyzing drugs.
‘We believe Tinslee is reacting in pain when she’s not sedated and paralyzed.’
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 littler 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
Trinity announced on Sunday that a court had issued a temporary restraining order against the hospital, delaying it from withdrawing life support from her daughter
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 George W 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 lie 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 the Tinslee’s family reach out to nearly 20 hospitals, its spokesperson said, including:
Texas Children’s
Children’s Memorial Hermann
Hospital
Dell Children’s
Dallas Children’s
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
Boston Children’s
Children’s Hospital of Los Angeles
Arkansas Children’s
CS Mott Children’s Michigan
LeBonheur Children’s Memphis
Rady Children’s
Children’s Hospital San Antoni CHRISTUS
Johns Hopkins
If no hospital agrees to take Tinslee, the family will have to go back to court again to get yet another restraining order on November 23
But those facilities all took the same stance that Cook Children’s has.
Tinslee’s family sought a court injunction to prevent the hospital from taking her off life support and, just hours before she was slated to die, the court came through for the Lewis family.
Tarrant County Judge Alex Kim issued a temporary restraining order on Sunday, blocking the hospital from removing life support through November 23, according to The Texan.
Tinslee’s family is relieved, for the moment.
‘We are a family who believes where theres just a little air, theres hope. So, don’t take nothing from her that you know she needs,’ said Beverly Winston, Tinslee’s great aunt, according to CBS DFW
‘Regardless of your reason, what the law is – she deserves the chance to fight for her life, and she has a troop who will help her 100% and above.’
But the clock is ticking once more for the Lewis family, who once again has just 11 days to find a new place for Tinslee to fight for her life, or head back to the courtroom again.