The parents of the late Charlie Gard have spoken out in support of the parents of Alfie Evans, and have indicated their support for a law change that would grant parents more power over the “best interests” of their children.
Young Charlie was just 11 months old when he passed away last July following a lengthy legal battle over his treatment fought between his parents and Great Ormond Street Hospital in London.
When Charlie’s parents sought to transfer him to New York for experimental treatment, Great Ormond Street asked the courts to override their decision, citing the “best interest” argument and highlighting concern over the form of treatment that would be used. The courts supported the hospital’s position, and a fierce legal fight ensued.
The parents appealed the case to the Court of Appeal, the Supreme Court and the European Court of Human Rights — all were denied. As Charlie’s condition worsened, he was eventually transferred, by consent, to a hospice for end-of-life care. Now, his parents, Chris Gard and Connie Yates, are getting behind a new appeal to change the law in order to endow parents with greater powers when it comes to these massive life or death decisions over their children.
“With heavy hearts we have watched as Alfie’s case has unfolded. For those who have not been in a situation like this, it is impossible to understand the pain Tom and Kate are going through,” Yates said, as reported by the Daily Mail.
She noted that when she was embroiled in a legal battle over her son Charlie, a terrifying reality dawned upon her: this would most likely happen again.
“When we were fighting for our son, Charlie Gard, to be given a chance to try a treatment that could have improved his quality of life, we realized that cases like these would keep happening until the law was changed. Tragically, this has proven to be true,” she explained.
With the introduction of “Alfie’s Law” by MEP Stephen Woolfe, Yates talked about the work she and Chris have been engaging in to try and give parents more of a say when it comes to deciding on their child’s life.
“Since Charlie’s passing in July last year, we have been working with pediatric consultants, medical ethicists, senior lawyers, U.K. politicians and other parents who have suffered through similar situations as us, to try and propose a law that will prevent parents experiencing painful and prolonged conflicts with medical professionals,” Yates explained.
“This involves addressing problems around the ‘best interests’ test as well as creating a platform for transparency and openness so that cases like these can be dealt with before they ever reach the courts. We were calling this ‘Charlie’s Law’ whilst also working on the foundation set up in his memory.”
She continued: “Once cases are public it is difficult for people to be fully aware of the complexities and this often leads to ill-informed judgments on both sides and creates unnecessary conflicts. We have something that is better for everybody — hospitals, healthcare professionals, families with sick children, the NHS, and the reputation of our own government.”
Yates is hopeful that those who are calling for action following the Alfie Evans case would join forces with the Charlie Gard campaigners to bring about real and lasting change. “We would ask those pushing for law change to take account of the careful work already done, and join us as we continue to push for a solution that is best for all involved,” she said.
Alfie Evans has continued to fight for nearly four days, even after his life support machine was disconnected.
Tom Evans, the father of Alfie, issued a “final” statement on his son’s current situation April 26, commending the “professionalism” of the staff at Alder Hey Children’s Hosptial. In a statement that was far removed from his earlier argument that clinicians had “misdiagnosed” his son, Evans thanked supporters for their dedication but asked that they now be given their privacy as a family.
“Our lives have been turned upside down by the intense focus on Alfie and his situation,” he said outside the hospital, as reported by Sky News. “Our little family along with Alder Hey has become the center of attention for many people around the world and it has meant we have not been able to live our lives as we would like.”
“We would now ask you to return to your everyday lives and allow myself, Kate and Alder Hey to form a relationship, build a bridge and walk across it,” Evans added, alluding to his current negotiations with Alder Hey staff on a possible transfer home for Alfie. He added, “We also wish to thank Alder Hey staff at every level for their dignity and professionalism during what must be an incredibly difficult time for them too.”
“In Alfie’s interests we will work with his treating team on a plan that provides our boy with the dignity and comfort he needs,” Tom continued. “From this point onwards there will be no more statements issued or interviews given. We hope you will respect this.”
In his previous statement, Evans explained to the public that Alfie had been off a ventilator for three days and highlighted that there had been no deterioration in his medical condition — he even suggested that doctors had misdiagnosed his son.
The stark contrast in his statements is likely to be because his lawyers have made it clear there are no other avenues to exhaust and that the only way they can secure a home transfer is by negotiating with doctors. Up to this point, the Evans family has been intensely critical of the staff at Alder Hey, and the fraught and tense relationship between the two parties has been made clear in the various court hearings.
On Thursday morning, Tom Evans revealed in an interview with British broadcaster Nick Ferrari that Aflie’s mom has been keeping him alive and comforted by cradling him on her chest, the Mirror reported.
In an incredible testament to maternal love, Kate James has been by her son’s side throughout this entire grim battle. While Tom has met with politicians, religious leaders and members of the media to secure their son’s right to life, James has ensured that her son keeps receiving the most important medicine there is.
The scientifically proven benefits of skin-to-skin contact between a parent and child are manifold. It can regulate a child’s heart rate, temperature, sleep and even emotions. Skin-to-skin contact helps the child’s nervous system, effectively reducing stress and pain.
“For the third day now, there’s been not one single problem with him,” Tom Evans said Thursday.
Please continue to pray for Alfie and his family.
(H/T: Daily Mail)