For the last year, we’ve heard about the British baby Charlie Gard and his parents’ fight for experimental medical treatment.
Charlie Gard was born on August 4, 2016 in Bedfont, London, United Kingdom. He first started having problems in October of 2016 with his breathing. Baby Charlie was taken to Great Ormond Street Hospital (GOSH), where they placed him on mechanical ventilation (a machine that breathes for him). His condition worsened over the next few weeks, without real answers as to why.
In November, the baby boy was finally diagnosed with mitochondrial DNA depletion syndrome. It is a rare genetic condition that causes progressive brain damage and muscle failure. There is no treatment and the disease is fatal.
U.S.-based Medical Care for Baby Charlie: The Legal Case
The case begins when the medical team and Charlie’s parents agreed to try an experimental treatment. However, Charlie sustained more brain damage during seizures in January. As a result, this made GOSH withdraw their support for the treatment. They felt the treatment was no longer viable, because Charlie was a shell of himself and would prolong any pain he was feeling. The hospital believed it was in the infant’s best interest to remove him from life support. However, the parents still wanted to try the treatment.
Over the next year, the parents and the hospitals fought in a series of court cases, which the courts consistently supported GOSH’s position.
“His parents, Chris Gard and Connie Yates, said they wanted to take their son across the Atlantic for nucleoside bypass therapy, but specialists at GOSH in London, where Charlie was being cared for, said the treatment was experimental and would not help.”
The parents dropped the challenge and withdrew Charlie from life support. Charlie Gard died on July 28, 2017.
Timeline: Initial | Baby Charlie Gard
- September 2016: One-month-old Charlie Gard is taken ill and eventually diagnosed with a rare genetic condition at Great Ormond Street Hospital. Most notably, the condition causes progressive muscle weakness and rapid brain damage.
- March 3, 2017: Great Ormond Street bosses ask Mr Justice Francis to rule that life support treatment should stop. The judge was told that Charlie could only breathe through a ventilator and was fed through a tube.
- April 11, 2017: Mr Justice Francis says doctors could stop providing life-support treatment after analyzing the case at a hearing in the Family Division of the High Court in London. He concludes that a move to palliative care (end of life treatment) would be in Charlie’s best interests.
Timeline: Escalation | Baby Charlie Gard
- May 3 – June 8, 2017: Charlie’s parents take their case through the Court of Appeal and the UK Supreme Court, with no success. They appeal the verdict to the European Court of Human Rights.
- June 27, 2017: Despite growing public opinion and financial donations backing the couple, European judges refuse to intervene. A Great Ormond Street spokeswoman says the decision marks “the end” of a “difficult process”. However, she says there would be “no rush” to change Charlie’s care and notes there would be “careful planning and discussion”.
- July 2, 2017: Pope Francis sends a message of support to Charlie’s parents, saying that life support must not be turned off. The Pope states Charlie should die of natural causes. The Vatican-owned Bambino Gesù pediatric hospital in Rome announces it is willing to continue Baby Charlie’s end-of-life care.
- July 3, 2017: U.S. President Donald Trump sends his own message of support to Charlie’s parents, inviting the family to America’s expert medical care.
Timeline: Final Stage | Baby Charlie Gard
- July 10, 2017: Parents Chris Gard and Connie Yates return to the High Court. They present fresh evidence about complex U.S. treatments they say could prolong the 11-month old Charlie’s life.
- July 24, 2017: Baby Charlie’s parents end their five-month legal fight over treatment for their terminally-ill son. Says their attorney –
“The parents’ worst fears have been confirmed, it is now too late to treat Charlie.”
- July 27, 2017: High Court judge Mr Justice Francis permits doctors to briefly delay stopping life-saving treatment. Baby Charlie’s parents move him to a hospice to spend final moments with their 11-month-old son.
- July 28, 2017: Charlie Gard dies after his life-support is withdrawn soon after being moved to hospice.
In Brief, Charlie Gard’s Diagnosis: Mitochondrial DNA Depletion Syndrome
Charlie Gard was diagnosed by the medical team at Great Ormond Street Hospital with mitochondrial DNA depletion syndrome (MDDS), which is a set of rare diseases caused by mutations in genes essential for mitochondria to function.
Questions arose as to whether U.S. doctors could have provided special care, reversing or stopping the progression of Charlie’s condition. In short, the answer is no. The United States has the leading specialists on genetic disorders such as this, but the facts were too dire.
A genetic test was performed, and two mutated versions of the gene coding for RRM2B protein were found – one of the set of MDDS. This causes brain tissue to be damaged and muscles to waste away. As of April 2017, only 15 other cases of MDDS caused by this specific mutation have been recorded.
Charlie Gard was laid to rest on his first birthday.