The tragic story of little Alfie Evans: The baby who came to define the "quality of life" debate

Alfie's father Tom Evans claims that doctors at Alder Hey Children's Hospital are refusing to provide the 23-month-old with oxygen.


                            The tragic story of little Alfie Evans: The baby who came to define the "quality of life" debate
Alfie Evans (Source:Getty Images)

After losing a last-ditch appeal at the High Court on Monday, toddler Alfie Evans father has said that his son's life support has been withdrawn by hospital authorities.

21-year-old Tom Evans told well-wishers that his son was taken off the ventilator at 9.17 pm but has been breathing own his own since. The devastated father claimed that the medics at Liverpool's Alder Hey Hospital were "refusing" to give Alfie oxygen in a Facebook live video just an hour after he was taken off support, reported The Sun.

Tom can be heard in the video, saying, "Alfie has sustained his life... He is needing oxygen but the hospital won't give him any."

"I don't know what to do. He's not suffering. He is losing his color and his fingers are going slowly blue but he is able to sustain his life. He needs to be oxygenated and they won't oxygenate him. All he needs is some oxygen. He is starting to need oxygen and the hospital are refusing to give him that," he said.

He added: "If you can hear me, I don't want to you to see anything but he's been sustaining his own life."

Presiding judges said today there was "no reason for further delay", adding: "The hospital must be free to do what has been determined to be in Alfie's best interests. That is the law in this country. No application to the European Court of Human Rights in Strasbourg can or should change that."

They continued: "Alfie looks like a normal baby, but the unanimous opinion of the doctors who have examined him and the scans of his brain is that almost all of his brain has been destroyed.

"No one knows why. But that it has happened and is continuing to happen cannot be denied. It means that Alfie cannot breathe, or eat, or drink without sophisticated medical treatment. It also means that there is no hope of his ever getting better."

For several months, little Alfie has been the subject of a life-support battle between his parents, health experts, and the British justice system.

Here's all that you need to know about the heart-wrenching story of the infant.

Having missed several developmental milestones in his first seven months, little Alfie has been living in a coma for over a year after suffering from a mystery illness. The family claims that he started making "jerking, seizure-like movements" and was subsequently taken to the doctors. However, they were told that he was a "lazy and a late developer."

Ultimately, Alfie was diagnosed with a chest infection in December 2016 that caused the seizures and was immediately placed on a ventilator at Alder Hey Children's Hospital in Liverpool.

The mystery illness

Tom Evans, the father of terminally ill 23-month-old Alfie Evans, holds up a court order as he speaks to the media outside Alder Hey Hospital where Alfie is being cared for on April 13, 2018 in Liverpool, England. (Photo by Christopher Furlong/Getty Images)

Alfie was born on May 9, 2016, with a degenerative neurological condition that doctors had not diagnosed previously. Medical experts believe that he might have a mitochondrial condition similar to Charlie Gard.

Once he was admitted to Alder Hey, his parents were told that he was not going to survive. However, the brave little guy fought hard to beat the infection and started breathing autonomously. As luck would have it, Alfie caught another chest infection and was placed on life-support once again when he began having more chronic seizures. Doctors at Alder Hey opined that it was in his best interest to stop mechanical breathing.

Mitochondrial DNA depletion syndrome

Mitochondrial DNA depletion syndrome is a group of autosomal recessive disorders that cause a significant drop in mitochondrial DNA in affected tissues. These syndromes affect tissue in the muscle, liver, or both the muscle and brain, respectively. 

The condition is typically fatal in infancy and early childhood, though some have survived to their teenage years. The condition is rare only 16 people, to date, have ever had the condition. There is currently no curative treatment for any form of MDS, though some preliminary treatments have shown a reduction in symptoms. One of these is Nucleoside bypass therapy.

 

Alfie's parents

The tot's parents are Tom Evans and Kate James, who are both in their 20s and hail from Liverpool. They fought together against the legal system and pressured them to keep their son alive.

Slamming every ruling the court made in his son's case, Evans has been vocal in speaking out to the public about his child's predicament. Tom even cited the 10 commandments in a court case, reminding them that "thou shalt not kill." He said that he and Kate were "in bits, distraught, in pain" after judges at the European Court of Rights rejected the case. He said that the verdict meant that their son was "about to be murdered."

Finally, the aggrieved couple was disillusioned when the Supreme Court dismissed the latest legal bid on April 20 to keep the toddler alive. The Court of Appeal had previously agreed with Alder Hey that the tot "could not be saved" and that it would be "unkind and futile" to continue his treatment.

 

The Pope 

Little Alfie's case was supported by thousands and even caught the attention of Pope Francis. He pledged his support to keep the toddler alive.

The Holy Father tweeted: “It is my sincere hope that everything necessary may be done in order to continue compassionately accompanying little Alfie Evans, and that the deep suffering of his parents may be heard.

"I am praying for Alfie, for his family and for all who are involved.”

Alfie's father visited the Pope on April 18 and begged him to "save our son".

Pope Francis used an address to say that the toddler's situation was "very painful and complex". He also asserted that terminally-ill patients must be treated "with unanimous support" from medical experts and their families.

Tom told the public gathered outside the Alder Hey Hospital that he was warned that he would face prison if he removed his son from the hospital. He also mentioned that there were police officers on the ward to stop him from taking little Alfie.

Lord Justice Davis ruled after one appeal that Alfie's life support must be turned off and that doctors had agreed that there was "no hope". He said: "We cannot have a kind of legal 'Groundhog Day' where you come back again and again and again on the same point."

After the European Court of Human Rights dismissed Tom's appeal, supporters blocked the road outside the hospital and attempted to storm the building soon after. 

Alfie's parents and his supporters are still holding on to the hope that the toddler will be given a shot at life, somehow.