US State Dept to UK: Let parents take critically ill toddler to get care

News: UK

Officials at the U.S. State Department have sought to intervene in the case of Alta Fixsler, a two-year-old girl on life support in a UK hospital whose parents desire to seek treatment outside the country.

“The Under Secretary for Political Affairs and senior officials in the U.S. Department of State’s Bureau of European and Eurasian Affairs have raised this case with the government of the United Kingdom,” said a July 23 letter from the Acting Assistant U.S. Secretary of State, Naz Durakoglu.

It added that “the U.S. Embassy in London has issued a non-immigrant visa for Alta in the event that she is discharged and her parents choose to transport her to the United States for further treatment.”

The letter was sent to Senator Marco Rubio (R-FL), who led a group of 10 Republican Senators in writing to U.S. President Joe Biden on June 21, calling for the United States to advocate on Alta’s behalf to British Prime Minister Boris Johnson. 

“We are profoundly troubled that the child of an American citizen is being treated this way in a country with whom we have a deep alliance and special relationship,” said the June 21 letter, from Senators Rubio, Mike Lee (UT), Ben Sasse (NE), Steve Daines (MT), James Lankford (OK), Josh Hawley (MO), Lindsey Graham (SC), Mike Braun (IN), James Inhofe (R-OK), and Ted Cruz (TX).

Alta Fixsler was born prematurely in late 2018 and sustained extensive brain damage. Her care has been the subject of contention between her family and medical personnel for her entire life. 

On May 28, the Family Division of the High Court in the UK ruled that doctors at Royal Manchester Children’s Hospital may remove Alta from life support. Her parents, Abraham and Chaya Fixsler, have objected to this on religious grounds, citing their belief as Hassidic Jews that human life should be preserved at all costs. 

“We are taught that life is sacred and not only must we preserve life, we also cannot be involved in bringing death closer,” Abraham Fixsler told the Family Division of the High Court in a May hearing. “In our faith, it is strictly forbidden to actively shorten a life. The only circumstances under which this might be permissible is where somebody is in constant suffering and pain, but we do not believe that these circumstances apply to Alta.” 

The family sought to appeal the initial decision, but the request to appeal was denied on July 9, with the appellate court agreeing with the earlier decision that it was in Alta’s best interest to be removed from life support. The family may now appeal to the Supreme Court.

Abraham Fixsler told the New York Post that the British government was holding his daughter “hostage,” and said that “[t]he doctors don’t think she has quality of life.”

"But I think she has quality of life,” he added.

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Alta sustained extensive brain damage during the course of her birth. She cannot eat, drink, or breathe unassisted due to the nature of her injury. Her body temperature must be maintained via life support, and she cannot hear, in addition to other neurological difficulties. A court noted that she lacks signs of conscious awareness, though Alta’s parents contend that she responds to touch, even to the point of having spasms calmed. 

The Family Division of the High Court ruled in favor of the child's doctors, who were unanimous in saying Alta should be taken off life support due to pain caused by her condition. In supporting their decision, the judge in the case said that the court must take the “assumed” view of the patient.

The court decision quoted one of Alta's doctors saying, "I don't think that Alta really has any conscious or cognitive ability to experience pleasure or joy." 

"The burdens of treatment are going to produce pain and suffering that would outweigh any potential benefits," the doctor said.

The Fixslers are Israeli citizens, and Abraham is also a U.S. citizen. Both Israel and the United States have offered long-term care for Alta. The May 28 court decision noted that an air ambulance was able to transport Alta to Israel, where doctors at Herzog Medical Centre were prepared to accept her.

The Fixslers wish to take their child to receive long-term care and ventilation at home in Israel, and had been planning to return to Israel even before court proceedings. Alta’s removal would come at no cost to the UK government.

The court has received statements supporting the Fixslers’ beliefs from the Chief Rabbi of the State of Israel, and the family’s rabbi, Israel Goldberg.

Goldberg explained that there is a strong preference in the faith for living out one’s last days in Israel, in order to have a proper ritual burial there.

"The majority of God fearing Jews would like to be buried in Israel. The first to come back [on the day of judgment] will be those buried in Israel. Those who are further away will have to go through suffering before coming back to Israel,” he said.

However, the judge in the case said he was “not satisfied that those spiritual benefits are sufficient to outweigh the additional burden of pain that would be placed on Alta by a transfer." 

In the weeks since the initial decision, then-Israeli President Reuven Rivlin asked Prince Charles of Wales to intervene and advocate for Alta’s life. 

In the United States, Alta’s case has drawn bipartisan interest. In addition to the letter from Republican Senators, several Democrats have taken action on the issue. 

On July 2, Senate Majority Leader Chuck Schumer (D-NY) announced that his office had obtained a non-immigrant visa for Alta. Schumer wrote to Karen Pierce, British Ambassador to the United States, to “urge that all health decisions that are against the wishes of the family be suspended until the citizenship process is complete and Alta can travel to the U.S.”

“All the Fixsler’s [sic] want is to follow their faith and get their little girl the best care in the process,” Schumer said in a press release.

Senators Cory Booker (D-NJ) and Robert Menendez (D-NJ) also wrote to Pierce to say that Phoenix Center for Rehabilitation and Pediatrics in New Jersey was prepared to accept the child, according to the New York Post.

This is not the first instance of UK doctors removing life support from an ailing child despite the wishes of parents. Almost four years ago, 11-month-old Charlie Gard died in Great Ormund Street Hospital (GOSH) after the withdrawal of life support. Gard had been diagnosed with a rare mitochondrial disease which causes brain damage. His parents were prevented from taking him abroad to seek foreign treatment; a U.S. neurologist had said that experimental treatment could improve Gard’s quality of life, and the Bambino Gesù Hospital in Rome had offered to provide the boy with long-term treatment. 

On April 28, 2018, toddler Alfie Evans died after life support was removed against the will of his parents. He had suffered from an undiagnosed degenerative neurological condition. The Italian government granted the child citizenship, and Bambino Gesù Hospital offered to accept him for diagnosis and treatment efforts. However, UK courts said it was not in Alfie’s best interest to be transferred, and refused to allow it.

Both instances involved sustained media coverage before and after the death of the children. Pope Francis had offered public support to the Gards and tweeted his thoughts on Evans.