Alta Fixsler’s medical odyssey began as soon as she entered the world on December 23, 2018. Doctors at Manchester’s Saint Mary’s Hospital realized that the little baby had been oxygen-deprived during labor and told the parents to prepare to lose their newborn within a few hours.

“The doctor came to me in the NICU and asked if I wanted to see the baby,” remembers Avrohom Fixsler. “I noticed right away that she wasn’t moving – she was like a doll, a statue. And she was blue, connected already to a ventilator. I had to ask a few times whether she was alive.”

It had taken 25 minutes of resuscitation to preserve even that small flicker of life in the little girl’s body, but sadly the brain was beyond repair – and the trauma to the lungs made her survival unlikely.

“At 3 a.m., a few hours after the birth, the doctors called, ‘Come quick if you still want to see your daughter.’ We rushed to the NICU and stayed a few hours until the crisis was over.” Somehow the little girl made it through.

The initial emotion was shock: The Fixslers had waited five years after the birth of Hershy, their firstborn, and were expecting a healthy baby.

Now, as the harsh reality set in, it was Chaya Fixsler who reacted first. “It doesn’t matter what will happen,’ I told my husband. ‘She’s ours, and we’ll take her as she is.’ It was an automatic reaction, a mother’s instinct.”

That attitude set the stage for a clash with the medical system. It wasn’t long before the staff from the NICU sat down with the young couple to discuss the future of the baby girl who’d by then become Alta – a name given by the Fixslers’ Rebbe, the Belzer Rebbe.

The medical staff were professional and courteous, but the young couple were about to discover that their different worldviews put parents and practitioners on opposite sides of the equation when it came to the baby’s best interests.

As far as the hospital staff were concerned, the parents had to move on. “Try putting your religious beliefs to one side,” Chaya Fixsler recalls one doctor’s words, “and think of what this will do to your lives. You’re young and can move on if you disconnect the baby from life support.”

It was Avrohom Fixsler who responded. “I can’t put my beliefs aside,” replied the young father. “They’re part of who I am. The One Who chose to give her to us will decide when to take her.’ The doctor’s response was, ‘If this is what you want, we will try to do everything to help her.’ Two weeks later, that doctor told me, ‘Your words are still ringing in my ears.’ ”

At that stage, the Fixslers were still encouraged by the willingness of the NICU doctors to try every medical avenue to preserve their child’s life.

But meanwhile, they were struggling with the burden on their own. Raised in the US and Israel, Avrohom’s only connection to Manchester, where he’d arrived in 2014, was Chaya’s parents who were living there temporarily. By the time Alta was born, Chaya’s parents had returned to Israel and the Fixslers were facing the battle for her life without any firm roots in the community or network of support.

With their newborn at death’s door, the Fixslers found it hard to share their struggles with others. “It’s very difficult to live with a burden like that, but during that first year, we built the kochos for the fight that came later. We had time to discuss it together.

“One of the first people that we told was Rabbi Yisroel Goldberg of Manchester. He was so good to us and spoke for us in court about Jewish values in end-of-life situations. He feels like family.”

The couple’s foreign background and sense of isolation also explains the way that the case became an international cause célèbre, essentially pitting American politicians against British medical and legal authorities, with local askanim on the sidelines.

Avrohom Fixsler reached out to Chayim Aruchim — an American Agudah-affiliated organization that deals with end-of-life sh’eilos — for assistance. The rabbanim’s psak was unequivocal: the Fixslers were to fight against any efforts to switch off Alta’s ventilator.

“If the psak would have been not to fight, we would have listened for the good of our baby. But if we’d been told, ‘it’s up to you,’ we would have done everything to save her. Because the job of parents is to give to a child without getting anything in return.”

Pain protocol There’s something pathetic, in the authentic sense of the word, about Avrohom Fixsler’s cell phone. There, sandwiched between the transparent protective case and the back of the device, is a small green hospital tag. It’s Alta’s wristband, a memory of the children’s ward where things started to go downhill.

When she was two months old, doctors in the NICU decided to wean her off the ventilator. That, the Fixslers learned, was the key test for continued care as far as the hospital was concerned. Ventilator-assisted breathing wasn’t a long-term option in a hospital — and there was no possibility of using a ventilator at home. The supportive NICU doctor said that a tracheostomy was needed to facilitate Alta’s breathing with oxygen. That, it turned out, would require surgery, which took place when she was eight months old.

At a later stage the couple were told that Alta’s release to home care was a matter of time and paperwork. In the meantime, their daughter would be moved to the adjacent children’s hospital, which was more suited to the care of the infant that Alta had by then become.

One wintery Motzaei Shabbos at the beginning of the Covid era, the Fixslers got an urgent phone call. “A nurse told us that Alta was about to be moved from the NICU to the children’s hospital — which is a separate institution — and that we should come,” Chaya says. “I protested that we’d been promised a meeting before that happened, but she said that she was just following instructions.”

Doctors at the new facility proved far more skeptical about Alta’s future than the specialists in the NICU, and in one meeting, introduced a new factor that determined the little girl’s fate.

“They said that she was suffering pain and so the only option that they could agree to was palliative care.”

The issue of pain became the heart of the legal battle that ensued. From the initial judgment that survived an appeal to Britain’s High Court, two facts become clear: first, that the parents’ religious beliefs stood little chance against the secular perception of human rights that proved decisive.

Second, that the legal team failed to bring to the table expert medical opinion that the baby was not, in fact, in pain.

“I’ve lost my trust in doctors,” says Avrohom Fixsler, “after I saw that they lied in order to make their case in court.

“If we could do anything different today, it’s to take a lawyer who really shares your values. Our last lawyer, a Muslim who believes like us in the value of a child’s life, didn’t rest. She says that it would have been better to take the hospital to court to release the child — as she herself successfully did in the case of Tafida Raqeeb, a brain-damaged five-year-old, a few years ago.

“That child is now in Italy, off a ventilator,” says Avrohom Fixsler, dwelling on what it says about his daughter’s case, “even though British doctors said it would be impossible for her to ever breathe on her own.”

Fast forward to May this year, and after two years of silent struggle, the Fixslers’ pain became public property. After fighting the initial court battle with no publicity, the last resort was to try international pressure to remedy what the law wouldn’t.

Within days of the ruling, the name “Alta Fixsler” had become a regular feature of media from the New York Post to London’s Daily Telegraph. The fate of the anonymous girl from Manchester became front-page news. What readers learned was shocking: doctors at Britain’s all-powerful National Health Service had decided that prolonging Alta’s life wasn’t in the child’s best interests. That, despite the fact that both the United States and Israel were willing to treat the baby at no cost to the UK taxpayer – and despite the parents’ contention that it was their religious duty to prolong the baby’s life.

The case inevitably drew comparison to a string of high-profile battles, such as those waged for Alfie Evans and Charlie Gard, which have pitted parents against medical authorities in Britain over the last few years. A lawyer for the Fixslers told this magazine earlier this year that the country’s secularism and overweening central health bureaucracy were responsible for the regular recurrence of the tragic cases.

“What’s different about the UK, as opposed to Israel or Germany, where I’ve worked with doctors,” said David Foster, “is that in those countries you’ll often hear doctors say, ‘I wouldn’t dream of withdrawing support.’ But in Britain, which has a more secular-liberal culture, doctors will make that decision. And a national organization like the NHS lends itself to homogeneous outcomes, which can go against a minority approach.”

If the case hit the headlines because of the perceived callousness of the medical establishment, it was top American politicians who maintained the pressure by asking hard questions about Alta.

An effective lobbying effort brought support from both Republican and Democratic senators. Senate Majority Leader Chuck Schumer arranged for a US visa for the baby and sent a letter to Britain ambassador to Washington couched in strong terms.

“My heart breaks for the Fixsler family,” he said in an official statement. “We’ve got them US visas, and I’ve written to the British ambassador and asked why Alta can’t come if her father’s an American citizen. We’re going to keep fighting because her life is at stake. For some reason the UK is still not letting her go — it’s hard to figure out why.”

The campaign to save Alta Fixsler became a Klal Yisrael operation, drawing in a host of askanim from the US, to Israel and the UK, in tandem with a legal effort sustained by a fundraising campaign.

“It would have been very difficult for us as parents to travel through the stormy waters of the last three years alone,” says Avrohom, with emphasis. “There’s one person who prefers to remain anonymous, (I’ll just refer to him with the pasuk “V’Haish Moshe anav me’od”) but he became like a grandfather to Alta.

“We are so grateful for the joint efforts of many kind-hearted individuals who played vital roles in helping us. Askanim we’d never met or in some cases heard of — and there are so many I can’t even begin to list them all — made this case their own and used their hard-won connections to ask powerful politicians to act on our behalf. It was a team effort so that Alta should be cared for in accordance with the halachic guidance that we received. We daven that Hashem repay all those involved with only health and nachas.”

But despite the international effort, as spring gave way to summer, Alta lost appeals to both Britain’s High Court and the European Court of Human Rights.

The effort to maintain a semblance of a normal family life while fighting this losing battle took enormous effort. But both parents felt that they had to retain a veneer of normality for the sake of their son, eight-year-old Hershy.

How did they explain the constant legal consultations and court appearances to their little boy? “We told Hershy that we’re trying to take Alta home,” says his father, as Hershy emerges to get more coloring papers. “But I kept it simple, I didn’t go into details or share our terrible frustration. I didn’t want to traumatize him or to cause him to lose trust in doctors at such a young age.”

With the walls closing in on their toddler, the Fixslers and their representatives tried every avenue, including being granted diplomatic status by another country to grant Alta immunity. Predictably, those schemes came to nothing — no one was willing to cause an international incident over the fate of a very compromised little girl in a UK hospital.

So as October approached, the Fixslers were faced with the shocking verdict: Their daughter’s ventilator would be switched off, and she would be left to die.

Because British doctors and judges claimed to know what was better for the girl than her own parents, a two-year-old in stable condition would breathe her last.

End of days

“This is the first time we’re talking about those last two weeks,” says Avrohom Fixsler, looking at his wife. They’re both dry-eyed, but it’s hard to remain the same when listening to their narrative, a story of parents’ vast love for a child who could never give anything back.

“For two weeks before the October 18th petirah, we lived with this death sentence. It was a terrible feeling — far worse than we’d known since Alta was born. And we weren’t allowed to talk about it, so there was no one to share it with.”

That silence was decreed by the judge’s final ruling, which had specified the time and place where the little girl would leave this world. It was only after explaining to the judge that they would need to share information in order to arrange a minyan that the news broke.

Alone at the beginning of their ordeal, that feeling persisted until the end. “I didn’t know what to tell my family. What is there to say?”

But as the end approached, the Fixslers’ love for their child showed itself in the way that they prepared for her to leave.

“A week before the end, I talked to Alta,” says her father quietly. “I said to her, ‘Be strong, and remember that the Eibeshter is with you, and that we’ll be with you until the end.’

“I saw her shaking when I talked to her. I can’t say whether she understood or not, but she shook when you spoke to her.”

As the final day — Monday, October 18th — approached, the couple learned that the hospital was refusing to bend the Covid regulations and wouldn’t accommodate the need for a minyan. So arrangements had to be made to transfer the baby to a hospice where the breathing apparatus would be removed.

At the hospice, they decided, they would preserve the most beautiful memories possible of their girl with a proper photo session — Alta’s first and last. In a testament of love, the Fixslers ensconced their daughter in new purchases for her final hours. In the pictures, Alta wears a stylish outfit and lies on cute pink linen, surrounded by fluffy cushions.

“Because of Covid, we’d had so few moments together as a family,” Chaya Fixsler says. “So we wanted to have those photos to hold on to.”

The Monday that dawned a few weeks ago, says Avrohom Fixsler, was “terrible — something I can’t stop thinking about.”

The couple went into the hospital at 9 a.m. and rode along in the ambulance that took their daughter to the hospice. Earlier, in an attempt to prepare Hershy for the inevitable shock, they told him that his sister wasn’t feeling so well.

It was important to Avrohom Fixsler that every possible avenue be explored; even at that late stage, he stresses, they never gave up hope. “I spent thousands more on a last appeal for the doctors to give a more concentrated form of oxygen than they’d prescribed. Right from the beginning, I never asked the lawyer how much of a chance we had to win. As Yidden we need to fight, not win. Only the Eibeshter decides what will happen.”

But finally, with the minyan gathered around the bedside, Avrohom Fixsler watched over Zoom as the judge rejected the last-ditch effort.

The hospital doctor removed the ventilator, and with difficulty, Alta began breathing on her own.

Prevented by law from lifting a finger to help, the Fixslers had to endure the horror of watching their daughter fighting for life. They sat by the bedside singing “Ani Maamin.”

“Do you want to know what the difference between Hagar Hamitzris and a Jewish mother is?” asks Avrohom Fixsler.

“I wanted my wife to step out of the room, so that she shouldn’t have to witness this sight. But unlike Hagar, who couldn’t bear to watch Yishmael die, my wife wouldn’t leave.

“ ‘I want to be with her until the last second,’ she said.”

Children are gifts

So soon after their wrenching loss, the Fixslers’ outward calm — the way that they look through those last images together in quiet tones — is part acceptance, part numbed pain. That’s why, they say, they plan to go back to Manchester next week and not make any life-altering decisions at this time. “You can’t make any changes like this,” says Avrohom.

Their ordeal, he says, is something that the UK Jewish community is going to have to absorb. “This is a new challenge — a baby was murdered, and there was nothing anyone could do in the courts.”

But beyond the wider meaning of their case, the Fixslers have been left with a heightened appreciation for the gift of children.

“There are people who are ashamed when they have a special needs child. We were never ashamed of Alta. She was a central part of our family.”

And there’s one more ironclad rule that this young couple’s ordeal has taught them. Having sacrificed everything for a child who could never reciprocate, it’s a belief that parents must be there for children come what may.

“Sometimes you have a child who doesn’t behave exactly as the parents want them to; what we’ve learned from Alta is that you can’t choose your children.”

The Fixslers look at each other in agreement, their daughter’s album close by. “We need to love them as they are, with no cheshbonos.”

(Originally featured in Mishpacha, Issue 885)