The way they took him away from me was terrible,” recalls 24-year-old Jonee Fonseca of Vacaville, Calif.,in a trembling voice, struggling to hold back tears of sadness mingled with rage. “I was trying to hold my son’s hand, and security ripped my hand away from my son.”
Those, Fonseca tells Citizen, were her final moments with her precious two-year-old son, Israel Stinson, as he spent his last breaths on earth and entered eternity.
It’s been more than a year since medical staffers at a Los Angeles hospital turned off Israel’s life-support system, against Fonseca’s wishes. His passing marked the end of a long, exhausting legal battle to save the little boy’s life.
“It was a heart-wrenching case,” remembers Alexandra Snyder, a lawyer who spent six months helping Fonseca and her family plead with the courts to keep Israel alive. “It breaks my heart what they did to him.”
‘It Happens Quite a Bit.’
Horrifying as it sounds, Israel’s case, according to the nonprofit Life Legal Defense Foundation, is not unique.
“It happens quite a bit,” says Snyder, the group’s executive director. “More and more what we’re seeing is that hospitals are very quick to take somebody off of a ventilator, or even remove their nutrition and hydration in some cases.”
Her organization is asked to intervene in two to three such cases each week.
Last summer, the world’s attention was drawn to a similar case in Britain. Charlie Gard was born with a rare genetic disorder causing brain damage and early death. But his parents refused to accept a London hospital’s view that their son’s life support needed to be withdrawn.
Instead, they spent months pushing for an experimental treatment that could save his life and even raised funds to fly him to New York for that purpose. The hospital said that treatment was useless and might even prolong Charlie’s suffering.
The battle ended in July, when Charlie’s parents accepted a neurologist’s opinion that their son had deteriorated so badly over the six months they had been fighting with the hospital that treatment would be futile. They agreed to remove life support. Charlie died just a few days shy of his first birthday.
As Fonseca followed the news coverage, she was struck by the similarities to her own fight a year earlier: the court dates, the doctors and nurses who seemed like opponents instead of allies, and the rollercoaster emotional pattern of hopes aroused only to be dashed.
“I always say he was an angel and I just didn’t realize it,” Fonseca says of her son. “His smile, it was just grand.”
Her vivacious little boy was also asthmatic, diagnosed at five months. Twice his parents—Fonseca and her fiancé Nathaniel Stinson—had taken Israel to a hospital for treatment, but each time he was back home in short order. The asthma seemed to be under control.
That’s why what happened on April 1, 2016, came as such a shock. The family, which also includes Israel’s older stepbrother and younger sister, was running an errand in nearby Sacramento when Israel started coughing and wheezing. This asthma attack was severe enough that Fonseca decided to take him to an emergency room.
Israel seemed to be fairly OK at first, even running around in the waiting area. The staff treated him by putting him on a breathing machine, which eliminated his wheezing. But as he and Fonseca waited for the next steps, everything suddenly changed.
“All of a sudden, he just collapsed in my arms,” Fonseca says. “I don’t know how it got to that point. It looked as if he had a seizure. I remember his lips turned blue and he started shaking.”
The hospital staff rushed in and saved Israel, who regained consciousness. They kept him overnight, and the next morning Fonseca says her son was talking and in good spirits. Later that morning, however, he collapsed again from what was determined to be cardiac arrest. Staffers performed CPR and tried for 40 minutes to get oxygen to Israel, but nothing worked.
“At the end of the 40 minutes, they told me he had gone too long without oxygen and that he was going to be severely brain-damaged,” Fonseca remembers. Her family’s nightmare had begun.
The hospital staff eventually revived Israel using an oxygenation machine, though he did not regain consciousness. He was soon moved to a ventilator, but Fonseca says the doctors ruled out any chance of recovery. “They were very adamant by this point, and by April 5 I was already told they were going to be pulling the plug any day.”
A Long Legal Struggle
Fonseca was furious and refused to accept the hospital’s plans. She began scouring the Internet for similar cases and talked to anyone she found who could possibly help. Through this chain of connections, Fonseca was referred to Life Legal Defense Foundation. The drama over Israel touched Snyder’s heart and was unfolding close to her home. She took on the case personally.
Snyder made a difference right away. By the time she came on board, Israel had been moved to a second hospital in northern California. But doctors there also declared Israel brain dead, even issuing a death certificate on April 14. Just before he was to be taken off the ventilator, however, Snyder went to court and secured a temporary order stopping it.
That bought Fonseca time to find her son a long-term chance at recovery. What she needed was a hospital to perform a surgery allowing feeding and breathing tubes to be placed in Israel’s stomach and throat. Then his family could eventually take care of him at home. According to news reports, the family began posting videos sharing their story on YouTube, set up a GoFundMe page and raised thousands of dollars for the travel that would be needed to move him from Sacramento to another hospital willing to care for him.
It wasn’t long before time again was running out. In mid-May, a federal judge rejected the order keeping the hospital from taking Israel off the ventilator. The plug would be pulled within a couple of weeks. The family still couldn’t find a U.S. hospital to care for their boy.
With only days to spare, Fonseca and her family found fresh hope. A hospital in Guatemala accepted Israel and performed the surgery. Doctors ran electroencephalogram scans measuring brain activity and declared Israel was not brain dead after all.
Over the next two months, Snyder says, Israel made progress that would have stunned his previous doctors in California.
“He would move to his parents’ voice, which is not at all consistent with somebody who’s brain dead,” Snyder recalls. “He had done all kinds of things that we thought were very encouraging, and showing signs that there could be some kind of recovery.”
Unfortunately, Israel could not stay in Guatemala for long; financial arrangements to pay for his care there fell through. But almost immediately, a hospital in Los Angeles agreed to accept him in the hopes of stabilizing him for eventual placement at home or in a rehab facility.
If only things had worked out that smoothly.
Not long after Israel’s arrival in early August, doctors at the L.A. hospital, like their counterparts in northern California, determined he was brain dead and decided to remove his life support. Fonseca and Snyder say the staff disregarded Israel’s test results and the progress he’d shown in Guatemala. Why, they wondered, would the hospital accept him and then rush to pull the plug?
The L.A. hospital, citing privacy concerns, hasn’t commented on the case. But in court documents uncovered months later by the Miami Herald, the medical director of the pediatric intensive care unit said he was unaware of Israel’s complete medical history until after admitting him as a patient.
In mid-August, Snyder helped the family get another temporary court order stopping the hospital from disconnecting Israel’s ventilator. Days later, according to The Washington Post, a Los Angeles Superior Court judge removed the order, ruling that the case had already been decided at the state and federal levels against Israel’s family before they left for Guatemala. Snyder says the judge was wrong, that this was a new case arguing the L.A. hospital needed to allow an evaluation from an independent neurologist before pulling Israel’s plug.
That was the final court ruling in the struggle to keep Israel alive. On Aug. 25, the hospital staff disconnected Israel’s ventilator. Fonseca was at her son’s bedside when security officers came to his room to prevent any interruption. She was on the phone with Snyder, who was frantically pursuing another court order as the plug was being pulled. Watching her son slip away, Fonseca recalls, “was a mix of emotions; of confusion, of anger. I probably said things I shouldn’t have said to the doctors.”
Israel’s sad saga illustrates dozens of similar cases around the country; in California, Missouri, New Jersey and North Carolina. Why is this happening?
Snyder thinks the recent move toward socialized medicine is playing a role. She and other conservatives believe the policy’s unstable financial footing has created pressure on health care providers to save money—sometimes by limiting care. That’s common practice in European countries with socialized medicine, and many fear the U.S. is heading down that road. American hospitals, Snyder says, “are quicker to write people off” than they were 10 years ago.
But the larger factor, in Snyder’s view, is that the country is embracing a utilitarian view of human life.
“There is a big movement that says if the person doesn’t have the quality of life that I think they should have, in my subjective judgment, then that person does not have the right to live or take up a hospital bed,” Snyder says. “We’ve shifted from valuing humans for who they inherently are to valuing them for what they can contribute.”
That’s corroborated by the nation’s surge in allowing physician-assisted suicide (PAS). According to the Death with Dignity National Center, PAS is now legal in six states and the District of Columbia. It was legal in only one state before 2009. Thirty states considered PAS legislation last year; none passed it.
Despite the hostile culture, advocates say there are things life advocates can do to prevent tragedies like Israel’s. “I’d love to see [a federal law] that says unless you expressly give permission to have your artificial nutrition and hydration withdrawn, then the hospital cannot withdraw it,” Snyder says.
The National Right to Life Committee’s Kansas affiliate passed a state law with similar intent in 2017: Simon’s Law says children with life-limiting diagnoses cannot be denied life-saving care without parental consent.
Snyder is also calling the Church to be part of the solution. “There are no homes for kids like Israel or for Charlie Gard,” she tells Citizen. “There are no alternatives to hospital placement, and I think that’s a place really where the Church should step up. You’re dealing in some cases with people who have profound brain injuries, but who don’t deserve to be put to death.”
A blueprint to study may be the Henry Vossen Neurodevelopment Centre in Roswell, Ga. Henry’s journey from being declared brain dead in 2010 to currently living the life of a nine-year-old elementary student who swims, skis and rides horses on his own is a story in itself. During his treatment, his family found that doctors, hospitals and schools generally lagged 15 years behind the current findings of neuroscientists when deciding how to treat children with brain injuries. The center named in Henry’s honor is designed to help those children get the intense therapy they need in a place where neuroscience, clinical expertise and families converge.
Fonseca agrees caregivers need better education on brain research to provide better treatment. “It’s just one big mystery to a lot of doctors,” she says. “The brain is so complex that they need to do more research.”
It’s still not easy grappling with the reality that Israel was never given a full chance at recovery, but Fonseca says her Christian faith and a desire to help others are what keep her and her family going.
Israel’s death “definitely will mean something,” she says confidently. “I honestly just want to bring awareness and let people know if you’re put into a situation like I was, it’s OK to take a step back and think about your options first. Do not rush to give up.”
For More Information:
Find out more about the work of Life Legal Defense Foundation at lifelegaldefensefoundation.org. To learn more about the Henry Vossen Neurodevelopment Centre, visit facebook.com/thehvnc or watch a YouTube video of his mother Emily’s TEDx talk at http://bit.ly/2iSESet.
Originally published in the January/February 2018 issue of Citizen magazine.