For Parents of Children Like Charlie Gard, Learning to ‘Redefine Hope’

Like Charlie’s parents, Connie Yates and Chris Gard, Mrs. Nimmo had sought experimental treatment in the United States for her daughter, Daisy, who had a rare genetic condition called Costello syndrome that made her partly blind and unable to speak more than a few words. She, too, grappled with the promises of alluring but unproven medical research and the dizzying array of armchair diagnoses on the internet.

The two sick children were even treated at the same London hospital, Great Ormond Street, which opposed the Gards’ court petition to pursue treatment abroad and, later, to bring Charlie home to die — just as it had thwarted Mrs. Nimmo’s request, six months earlier, to have Daisy’s life-support systems removed at home.

“Charlie was in the same intensive care department as Daisy,” said Mrs. Nimmo, a leading advocate for parents of terminally ill children. “It was shocking to see the crazy media circus and these parents stuck in the middle trying to save their child.”

“I had a longer journey and I came to accept Daisy’s diagnoses,” Mrs. Nimmo said. “I sometimes disagreed with the doctors, but there was never a complete breakdown in communication as happened with the Gards.”

Alfie’s father, Thomas Evans, argues that Alfie has shown signs of improvement and that it is his parental duty to do everything possible to save his son’s life.

“When your child has such a rare disease, you realize, this isn’t the child I was expecting and you mourn, but you start to love the new child,” Mrs. Nimmo said. “Then you are told your child will be taken away, and then you have to get your head around that. It is an emotional roller coaster.”

Daisy’s condition worsened after she turned 3. Mrs. Nimmo and her husband, Andy, traveled twice to the United States, to Portland and Seattle, where world experts who were studying the same genetic mutation afflicting Daisy met to discuss their research; their treatment had not yet been tested on mice.

“We were initially very excited, until we realized it could take up to 10 years before the treatment could be clinically applied,” Mrs. Nimmo said. “As in the Gard case, we were determined to help her, but I did not want my child to be a guinea pig.”

“Like Charlie’s parents, I initially thought it was my right as a parent to decide on treatment for my child: I thought, ‘How dare they tell me what to do!’” she said.

“The level of pressure you are under as a parent is hard to describe,” Ms. Langton-Gilks continued. “You can’t give up hope when hope is only defined as cure. But you have to redefine hope as something else when there is no cure. You have to accept that your child will die to give him or her a good death, to stop the suffering and strive for quality of life over life at all costs.”

David spent his final days at home, where she organized parties with his friends and he played with owls, his favorite animal, which Ms. Langton-Gilks allowed to fly in her kitchen. He became a Buddhist, meditated and wrote a will, giving his banjo to a family friend, a tray of jelly beans to his sister and a ceremonial Chinese sword to his brother.

After she was put on life support, Mrs. Nimmo said she decided it was time to let her go.

“As a parent, the decision to take your child off of life support is the most selfless thing you can do because you want your child to live,” she said. “But you have to ask, ‘Who am I doing this for?’”

As Charlie’s parents would months later, Mrs. Nimmo asked Great Ormond Street Hospital if she could take Daisy home while on the life-support machines, so her final moments would not be in an institutional setting. The hospital refused, saying Daisy might die in the ambulance or have potentially harmful complications that could be handled only by an intensive care team at a hospital, a risk her mother did not want to take.

“The most important thing is that Daisy knew I was there and she knew she was loved and surrounded by love,” Mrs. Nimmo said.

“My family went from six to four,” she noted. “We are open and determined to get on with our lives. That is what Daisy taught us: Make the most of your finite time.”

 

August 09, 2017

Sources:` New York Times

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