“We’re doing things to her. Not for her.” (Wini King, spokesperson for Cook’s Children’s Hospital, January 3, 2020) This may be the best description of a very sad case.

Tinslee Lewis was born prematurely on February 1, 2019, with severe heart and lung defects. She had cardiogenic shock and was admitted to the Cardiac Intensive Care Unit (CICU) at Cook Children’s Medical Center immediately. (See cardiac pathology below.)

Even after three open-heart surgeries, a fourth to close her sternum, a short time on ECMO (essentially, heart-lung bypass), and constant ventilator since July 2019, Tinslee’s enlarged heart and small, damaged lungs can’t keep up with the necessary blood circulation and exchange of oxygen and carbon dioxide, even with the assistance of multiple blood pressure medicines, diuretics, and the ventilator on high, except when she’s still and quiet with the help of sedating and paralyzing drugs.

In response to a lawsuit against Cook Children’s where Tinslee has been in the CICU since birth, Tinslee’s medical records were submitted to the Court. I’ve been able to review approximately 200 pages that are now public record, describing the constant, repetitive interventions necessary to keep Tinslee alive on the ventilator.

Tinslee’s doctors (and, the notes show, the nurses and staff) believe that they are being forced to cause Tinslee pain and suffering while keeping her paralyzed and sedated. They report increasing difficulty with managing the ventilator so that her damaged heart and lungs can maintain oxygenation. She requires repetitive heart, lung, and blood tests to guide adjustment of medications and treatments and has had several infections requiring treatment.

In contrast to my earlier presumption, the notes in the records show that the ventilator and all its required medications and manipulations are indeed causing undesired problems, including fluid overload, infections, and cardiopulmonary distress, in addition to her underlying lung disease. Even the baby’s growth, something we usually celebrate, increases her risk of cardiopulmonary insufficiency.

Those records also contain notes from many attempts to explain and counsel Trinity Lewis, Tinslee’s mother, about her baby’s underlying problems and prognosis and the reasoning behind it, in contrast to some past media reports.

Ignoring the fact that doctors, not hospitals, practice medicine in Texas, Texas Right to Life lawyer Joe Nixon is quoted, claiming that the “hospital” has decided to withdraw treatment. Texas Attorney General Ken Paxton tweeted that the problem is a “legal issue” rather than an ethics and justice matter of forcing doctors (and by their orders, nurses and other staff) to cause pain and suffering for a little girl who is dying as her body fails to heal, in spite of every intervention possible.

Many people, out of compassion, object that “the family” should decide when to withdraw life support. Yet, the family members aren’t watching the oxygen levels drop while they rinse Tinslee’s airways with a bicarbonate solution to keep her lungs clear. And it’s certainly not the lawyers that are probing, injecting, measuring, and adjusting constant, innumerable hourly interventions done to a baby who must be sedated and paralyzed to prevent cardiac and respiratory distress.

In spite of the diligent complicated interventions and care of the doctors and nurses at Cook Children’s, there have been comments in blogs and social media that the “hospital” wants to “kill” Tinslee. Startlingly, AG Paxton called the latest court-ordered, indefinite hold on removal of life support a “stay,” as though the doctors, not her multiple medical problems, would kill Tinslee. He also misrepresents the process that Cook Children’s Medical Center and Tinslee’s doctors followed:

The statute fails to require that physicians provide an explanation of why they refused life-sustaining treatment and provide the patient’s family with adequate notice and opportunity to argue their position prior to the committee reaching a decision, effectively allowing the government to deny an individual’s right to his or her own life and to do so without due process.

In fact, though, it is the lawyers, particularly at Texas Right to Life (TRTL), who are turning a little girl’s tragedy into a continuation of their legal battle against the Texas Advance Directive Act. I’ve covered the benefits of and the struggle to improve the Act — repeatedly blocked by TRTL and their lawyers — for years on both WingRight.org and Lifeethics.org

The Act, TADA, was hammered out in 1999 by a group of stakeholders including patient and disability advocates, hospitals, doctors, ethicists, and lawyers. Texas’ pro-life organizations, including TRTL, and the organization for which I served on the board of directors for 15 years, Texas Alliance for Life, and for whom I wrote another essay.

Briefly, TADA allows a balance and legal options when there’s a difference in opinion between a patient’s desire for a given treatment and the medical judgment (a combination of education, experience, and the standard of care) of the doctors who are tasked with the most difficult medical and surgical cases.

I’ll admit that it’s my opinion — and only my opinion — that the lawyers hate that TADA provides a safe harbor from lawsuits if doctors follow the law (!). I slowly came to this conclusion over the years because, at virtually every legislative hearing and stakeholders’ meeting about any changes to the Act; the lawyers bemoan the fact that doctors don’t have to go to court over each of these cases and that they face no legal penalty or “liability.”

Poor Tinslee Lewis will most likely never leave the hospital alive. Disease and death don’t respect “due process,” but, they are predictable and an inevitable part of life. Hopefully, we will see her mother and those who love her come to find peace with her death, celebrating the time they’ve had to be with her, especially these last two months. However, I fear that the lawsuits will continue for years, adding to their grief.

 

Ebstein Anomaly – Cardiac Pathology 101, about as simple as I can make it (and understand,  too);

Ebstein Anomaly
(Thanks to Mayo Clinic)

Babies born with Ebstein Anomaly have a malformed right and atrium and ventricle and misplaced (tricuspid) valves between the right-sided ventricle and atrium. The larger right ventricle can’t pump efficiently.

In addition, the blood the right ventricle tries to pump into the lungs leaks/flows/churns (risking blood clots) back into the right atrium, which grows even bigger, with even thicker walls. The ventricle also grows bigger. When the muscle fibers of the chamber walls get stretched apart enough, they are less efficient. (Think of two hands gripping at the fingers. The farther out the grip, palm > 1st joint  > fingertips, the less strength and pull on the opposite hand.) (For the geeks: Frank-Starling law.) The lungs aren’t efficiently filled with blood, they don’t expand, the pressure builds up in them, and efficient exchange of gasses doesn’t take place.

In the meantime, the blood backs up in the body, the liver, kidneys, and extremities and eventually the left side of the heart, which can hypertrophy, too.

The enlarged heart puts pressure on the lungs and nearby soft tissue, including the blood vessels coming to the heart.

The combination of leaking high-pressure blood vessels and the body’s increasing fluid in order to try to pump what oxygen there is, leads to edema or swelling of the body.

Sometimes, the fetal atrial-septal defect stays open, allowing mixing of the unoxygenated blood from the right, with the oxygenated blood. This malfunction can help, temporarily.

With the high pressure, poor flow, and actual physical damage due to the mass of the heart, none of the organs can function well. Increased activity, stress, and growth will increase the demand for oxygen, kidney & lung function.

Beverly Nuckols, M.D., is a family practice physician who resides in New Braunfels, TX. She has served on the board of Texas Alliance for Life for 15 years and currently is a member of the Public Policy Committee. This article first appeared in her blog WingRight on January 5, 2020, and is printed here with her permission.

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