Dec 20, 96: Anxious but cooperative.
April 14, 97: Teary-eyed 3-year-old (I wept when the record noted that he carried his beloved red fire hat).
May 27, 97: Cried on induction (Fire hat and butterfly net in attendance).
Dec 15, 97: Cried on induction.
Of course I didn't see these reactions because I wasn't given the option of being in the operating room while he was put to sleep.
So I was heartened to read a recent report on parent presence at surgical induction (and recovery) by a group that includes parents and professionals from the Canadian Family Advisory Network, the Canadian Association of Pediatric Health Centres and the Canadian Association of Child Life Leaders, as well as youth.
I found the report on Sasha Bella Stein Blumberg Forever -- a blog created in memory of a little girl who died from serious heart and liver problems. Her father Jonathan writes the blog and her parents started a fund to support family-centred care at SickKids hospital in Toronto.
Jonathan writes that an anesthetist describes induction without a parent like this: “A stranger picks you up and takes you away and puts a mask over your face and you wake up in pain."
The full report is posted on the Sasha Bella site and includes these findings:
97.3 per cent of 121 parents surveyed said it was very important or important for them to be present at induction, but about one-third had never been present.
Parents noted that they felt they had to "fight hard" or "battle" to be present at induction; that to be denied access made them question hospitals' stated commitment to family-centred care; that preparation for parents who attend an induction was essential; and that parent presence was particularly important when a child had developmental or other chronic conditions.
Just over half of 32 teenagers said they wanted a parent present with them at induction to make them feel safer, more comfortable and less alone.
A survey of 16 Canadian hospitals found wide variation in whether parents were allowed to be present. One hospital said it "always" gives parents the option, five said they "usually" do, eight said they "occasionally" do, and two said they "never" do.
Research suggests that being present does not necessarily reduce anxiety in patient or parent at the time of induction, but may reduce anxiety or other negative outcomes from the experience over time. Overall, the report says, there is agreement that parent presence is usually helpful when the child is undergoing repeated surgeries or has a mental health or developmental condition.
Recommendations included: that hospitals consider the benefits of parent presence and learn about the experiences of hospitals that have established programs; that CAPHC make information about member hospitals' policies available on its website: that parents be informed in advance whether they can be present, and, if they can't, why not; that where parent presence is offered, parents be educated in advance about what to expect and how to support their child.
I believe preparation is essential -- and can't be done on the fly in the OR. When I accompanied Ben for the first time more recently it wasn't till he was sitting on the table that a nurse said: "He may fight it. He may fall back, so I want you to be prepared. His eyes may fall back in his head."
In addition to preparing parents for what to expect -- and perhaps having a child life specialist present as a child/parent support -- it would be great if children could be put under in a "safe" adjoining room -- without the technology and tools visible -- or if hospitals looked at how to make the OR more child-friendly. Much effort is expended on the latter in other parts of children's hospitals, only to be negated by the frightening scene that awaits in the OR. The room Ben had his hip surgery in was massive, with imposing lights and boxes of technology and equipment that reminded me of power tools.
We've had anesthetists and nurses who took the time to explain equipment, cheer Ben on and reassure me, and others who just wanted to get the job done: they pulled the mask from behind him, so he didn't see it, then placed it on his mouth and held it while he thrashed.
It's painful to see your child's body fight, then slump, then become lifeless. Last time the anesthetist and nurses looked up at me expectantly -- as if to say: "This is your exit lady." I bent over to kiss his cheek and breathed in the foul gas still billowing from the mask. They took off his hospital gown and I left him there, unconscious and naked.
It's disturbing, but I wouldn't have it any other way. A child deserves to have a parent with them through that kind of horror.