Sunday, August 15, 2010

In the OR he wanted me -- not his fire hat

I remember when I first purchased my son's medical records how wrenching it was to read how he had reacted to being 'put under' when taken to the operating room.


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.


9 comments:

Oh, yes. I believe this as well. And it's nothing but condescending to believe otherwise, I think. It's difficult to imagine the times in the past when parents weren't even allowed in their children's hospital room overnight. Oy...

Thank you for sharing your experience. My son hasn't had any surgeries, yet but the day is coming when he will and I'll remember your words and hopefully either myself or his Dad will be able to be there for him when they put him under.
Reading the part where you describe your experience with your son brought tears to my eyes.

Absolutely, I agree. When we handed Gabe over to the anesthetist for his heart surgery when he was six months old, I could feel my knees buckle in fear. Now, looking back, I knew I should have fought to be in that room. Fortunately, for the past two procedures where Gabe has been put under, Terry has been with him. We asked for it and it was granted to us. Once in Vancouver and here in Ottawa. So I think this is a Canada wide effort even if still a new acknowledgment.

I will never, ever forget my daughter looking over the shoulder of a complete stranger as she was carried away. I had no idea we could ask to be present.

The inconsistencies disturb me. We can do this better and it costs very little,
I would volunteer to read the Family Centred Care brochures to people.
Oh wait, I tried that already :)

Lisa

Skyler went for an MRI when he was two months old, fortunately they knocked him out while he was still in his pod (room in the NICU shared with other babies) and I got to be there for that.

His next MRI will likely be when he is three according to his neurologist. It's this one I'm most worried about, as it will be an outpatient thing in a different (bigger) hospital and he will be much more aware of what's going on, which means he will probably be freaked out. I know that my husband and I will both fight to be with him if they don't give us the option. I do however believe his neurologist is a wonderful doctor and he likes us a lot so hopefully he will respect our wishes without a lot of arguing.

We just found ourself holding our little man's hand as he was put under yesterday. For each of his surgical procedures the pediatric OR, at John's Hopkins hospital, have allowed both my husband and myself to be present when Corrigan was anesthetized.

To be honest, the very first time I was a shaking mess. I was SHOCKED that they were wheeling me through the doors with Cor on my lap, I thought FOR SURE they would take him from me outside the OR suite but they were so encouraging...so very supportive of parents being there to hold their child's hand, place a gentle kiss on their cheek before walking back to the waiting room.

During his g=tube surgery, the recovery room was full and Corrigan was awakening in the OR suite while they were waiting for his spot to open...so they called me back so that I could be there as he fought his way back to consciousness. They did not want him to wake and be frightened and agitated in a scary surgical suite.

When we just went back, yesterday, it was different because this time he was put under with a mask when before it had been something fast acting through his accessed IV...so it was kind of upsetting to watch him struggle and fight for a few seconds as he slipped under but the anesthesiologist heard me singing "Jesus Loves Me" to him as he screamed in the mask...and she leaned in and joined me in song. It was amazing and I was so comforted that she did that.

I am so thankful that John's Hopkins gives parents this opportunity to be there in such frightening times!!!

Mindy

Thank you everyone for your comments and experiences. What a hot button topic for parents!

I posted a note on a pediatric anesthesia forum at SickKids because I would love to hear the perspective of an anesthetist. I hope we get some responses!

It's great to hear of the steps professionals went to to ensure you could support your son Mindy -- whether in the OR during induction or when he woke up there before being transferred. I hope he is recovering well from this last surgery!

Hello Everyone,

I was also moved to tears upon reading this story, but wanted to wait before sharing my thoughts on this matter, as I am adult whom has a disability, and dispite having had several surgeries (two were major), I will require two three more operations in adulthood.

First, I wish to state for the record, "I believe it to be of vital importance and wellbeing, to both parents and children, to be present during induction. For, in this moment, a child must not only feel relaxed, safe and loved, but a parent must also feel secure and reassured that thay have done everything in their power to aid their child in his or her time of need, dispite any horrors that one may witness. Furthermore, having had some experiece with those who have cognitiive or developmental disabilities, I advocate that a parent or guardian (and, if possible, the patient) should always be given a choice in spite of one's age.

However, as for myself, when I undergo surgery, yet again, in late 2011 or early 2012, my parents will be placed in the waiting room, as I will do whatever necessary to spare them pain --my Mom disagrees with my most recent decision, as she's just exclaimed that, "I'm sick in the head!" Maybe, I am, but she hasn't read this piece and has been through enough.

love
matt

Our son had his first kidney transplant at 4 yrs and 2nd at 10. With each surgery, pre op tests and a hip replacement as well, we have been there with him. Our face is the last he sees going under anesthetic and the first when he awakes post op. The trust and bonding between us has been remarkable! Each of his Drs found this whole process a 'win win' situation. With tests, ongoing surgeries and dialysis treatments, his phobia of needles has him traumatized, so therefore his trust in us his parents/advocates has been paramount.
Doctors must realize that children have a right to be secure, loved and supported in any/every situation that requires medical attention. As parents we need the peace of mind, the child needs the parents and the whole procedure benefits. It truly is a win-win outcome!