Maybe if I squint, reality will look different

By Louise Kinross

It must have been because I had just made a mental note that things were going quite smoothly for my son with his post-high school transition and he was quite happy.

It was that same night that I learned from a private physio that he had a curved spine.

I had been trying for months, to no avail, to get someone in the adult system to see him due to concerns that he was walking with a crooked gait.

In the last 24 hours he’s been seen by a specialist and had x-rays taken and I’ve learned that many youth with my son’s syndrome have had surgery for scoliosis and/or have had exostoses—benign bony growths—removed from their spines.

I recall seeing scoliosis listed as one of dozens of potential symptoms associated with my son’s condition. But for some reason I never connected it with my son as he’d had no issues in this area and they typically show up in the teens.

I went onto the Facebook group for parents of kids with this syndrome last night and asked about others’ experiences and was astounded by the number of messages that came back.

So now I’m sitting with the fact that there may well be another surgery or intervention of some kind in my son’s life. His last was last summer.

I took the physio’s suggestions and went online. I ordered lateral supports to try to keep him straight when sitting—at great cost—from the U.S., as well as a special stool. Then we went to Walmart and purchased the table she recommended. Oh, and on the way back, we stopped at Foster’s shoes to ask them to put an additional lift on my son’s shoe.

The lateral supports, which came yesterday, aren’t working that great, but who wants to pay even more money to courier them back to the U.S.? Thankfully, a parent on the Three To Be Facebook group told me about a brand that was cheaper than the original product we looked at. I can’t help wondering why these items aren’t available here? Is it necessary to order from the U.S.? Or are these companies benefitting from my sense of desperation and urgency?

The other thing the specialist said was that my son looked like he was in pain because he’s carrying his body in an awkward position. My son has a very high pain threshold. Recently he’s been asking constantly for back rubs, which he signs as “chop chop.” So we got out the Tylenol last night.

And I almost feel like if I just keep this whole thing to myself, maybe it won’t happen? You know—the magical thinking that Joan Didion talked about in her memoir about her husband's death?

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Could surgeons benefit from a coach like athletes do?

By Louise Kinross

I just read a fascinating review of the new book Do No Harm, a memoir by one of Britain's top neurosurgeons Dr. Henry Marsh. 

New York Times reviewer Michiko Kakutani describes it as "an extraordinarily intimate, compassionate and sometimes frightening understanding of his vocation."

This quote from the book stands out: "It's one of the painful truths about neurosurgery that you only get good at doing the really difficult cases if you get lots of practice, but that means making lots of mistakes at first and leaving a trail of injured patients behind you."

This reminded me of a National Post story last month in which a Toronto surgeon advocates for ongoing coaching of surgeons using video replays of operations.

"We graduate, and then we start practising," said Dr. Teodor Grantcharov of St. Michael's Hospital. "And nobody watches anymore. Nobody sees what you do and how well you do it. We're waiting on adverse outcomes."

The Post story references a study by Grantcharov in the journal Annals of Surgery that compares coaching residents using video to conventional training in the class and in the operating room with senior surgeons.

According to the study, general surgical residents at the University of Toronto who met with an experienced coach who used a video of a trainee performing an operation to identify errors, then showed an expert clip and gave advice, performed at a higher skill level and made barely half as many technical mistakes as those taught conventionally.

It works for training athletes and pilots. Doesn't it seem like a no-brainer that it would work for surgeons, including neurosurgeons?

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Parent presence at induction: An anesthesiologist speaks

After my last post supporting the option of parent presence when a child is anesthetized for surgery, many parents and a reader with a disability shared their experiences and opinions.

I wanted to hear the perspective of an anesthesiologist, so I posted a query on the pediatric anesthesia forum run through SickKids in Toronto. This online forum draws questions and insights from children's anesthesiologists from around the world.

I was delighted to hear from Dr. Matthias Konig of Cincinnati Children's Hospital Medical Center. Our correspondence appears below (my initial message has been shortened to omit an explanation about BLOOM). Dr. Konig directed me to an excellent review of the literature, but I need to obtain permission to post its findings. However, you'll get the gist of the results from my response to his message. Louise

Pediatric Anesthesia Forum

General Pediatric Anesthesia => General discussion => Topic started by: LouiseKinross on August 17, 2010, 06:09:31 PM

Title: Parent presence at induction Post by: LouiseKinross on August 17, 2010, 06:09:31 PM Given a CAPHC report showing parents overwhelmingly want to be present when their child is anesthetized in the OR, but wide variation in 16 Canadian hospitals surveyed as to when they do or don't allow parent presence, I would be grateful to hear comments from anesthetists as to whether you support, or don't support, parent presence, and why. In addition, I am interested in knowing if any hospitals have a separate, "safe" ante-room where children are put under before being taken to the OR. Operating rooms are horrifying places (massive lights, boxes of technology, frightening tools, people in masks). When so much effort is expended on making other experiences in the hospital child-friendly, I'm surprised that so little has been done to reduce the trauma of being taken to the OR and having a stranger put a mask over your face. I am communications manager at Holland Bloorview Kids Rehabilitation Hospital here in Toronto, and write a blog on parenting kids with disabilities. I wrote a blog related to the new report re parent presence and my own personal experience with my son, who has had multiple surgeries. We've had a number of parent replies but I want to hear from anesthetists! Why do you, or don't you, support parent presence? Does anyone have positive experience with a safe ante-room where kids are anesthetized before being taken to the OR? Or with other initiatives to make the operating room or induction less traumatic? Many thanks! Louise Title: Re: Parent presence at induction Post by: mwkonig on August 20, 2010, 01:57:41 PM Certainly a controversial topic and there probably isn't a single "right" answer to all aspects of this. One of the problems when discussing this topic is that we need to differentiate between what the parents want and what is beneficial for the child. It is easy to show that parental satisfaction increases when they are allowed to be present during induction of anesthesia. Despite the parental perception that they "help" their child during this phase, it is actually not at all proven that parental presence in fact benefits the child. This issue has just recently been reviewed in a Cochrane study and the author's conclusion was that parental presence is not superior to induction without parents, and likely less effective than premedication (see Yip et al.: Non-pharmacological interventions for assisting the induction of anaesthesia in children" Cochrane Database Syst Rev 2009: CD006447). That being said, ultimately a lot of other factors come into play, many of them simply concern the logistics involved in providing the "parental presence option". Depending on OR layout, number and type of cases, available personal, additional expense, etc., bringing all parents into the actual OR for induction may be difficult and impractical and therefore parental presence may not be offered routinely at some places. At my hospital we have induction rooms for most of our OR' so bringing parents in for induction is relatively easy since they dont have to change into a "bunny suit" or scrubs. As a consequence of this culture, parents here ususally expect to be able to accompany their child, even in cases where theit would certainly not make much sense, such as in the case of a small infant or an immature and tearful teenage parent. So many of us would like to sometimes limit this practice a bit, particularly when it seems unlikely that the child will get any benefit from it or when oral premedication with midazoloam seems more effective. Matthias Konig Title: Re: Parent presence at induction Post by: LouiseKinross on August 22, 2010, 11:31:02 AM Dear Dr. Konig: I'm immensely grateful for your message and insights. Thank you for referring me to the Cochrane review, which I read. I was surprised that in the eight studies assessing parental presence not one showed parent presence reduced child's anxiety (vs induction without parents). I did have a few thoughts. The review notes that most studies excluded children with a history of chronic illness or developmental delay. Some excluded children who had received previous surgery. I think this is precisely the population in which parents are most insistent that they be present: children with chronic conditions who endure repeated surgeries (going to the OR is not a discreet/one-time, quickly forgotten event in the life of the child/family, but occurs multiple times a year, over years) and who may have developmental disability/be non-verbal (unable to advocate/parent is their only voice). Perhaps it would be useful to study this specific population by tracking physiological indicators of anxiety at time of induction when parents are present vs. non-present. I think we also need to look at long-term impact of parental presence for this population. The studies are telling me loud and clear that my presence is not reducing my son's fear in the moments of induction. What they are not gauging is the long-term psychological impact of him knowing that I am there. Yes, he went through hell, but mom was there. What does that mean for the level of trust between a vulnerable child and parent over time? What does it mean for the parent to be able to say: I couldn't take away the fear, but at least I was witness to it. He didn't do it alone. (of course this may be irrelevant for the healthy, verbal child going in for the one minor surgery he'll have in his entire childhood). The Cochrane review notes that most children find induction very stressful. My son has had more than a dozen surgeries and it was only recently that I learned he could be given a sedative in advance (and you note that premedication was shown to be superior to parent presence in one of the reviewed studies). A parent wants full information that puts them in the best position to choose a course of action that will reduce their child's stress. The review is positive in noting that child-focused interventions (therapeutic clowns, hypnosis, a quiet, low-sensory environment, and hand-held video games) can reduce anxiety. I hope we see more studies of these interventions with the most vulnerable children -- those who have repeated surgeries and those with delays who may not be able to speak for themselves. How was the rationale made at your hospital for separate induction rooms that accommodate parent presence (given studies suggest it does not benefit the child)? Again, thank you very much for taking the time to educate me about the Cochrane review and shed light from the perspective of an anesthesiologist. I will share our correspondence with the parent readers of BLOOM who I know will find it invaluable. Cheers. Louise

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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.

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Surgery number two

I wrote this yesterday but had trouble with the photo. Mr. Houdini (above) did not cooperate last night and both IVs were eventually removed after D'Arcy had had enough of holding Ben down. We told them the hand IV wouldn't work (he also had one in his foot). We told them he had a phobia. We asked for sedation. We told them it would be bad. But the bad had to happen before it came out.

Surgery number two

This is a photo I took of Ben waiting for his surgery this morning. For a brief moment he forgot about it and laughed at the movie he was watching.

He didn't look anything like this in the recovery room. He lost blood during the surgery and was white, puffy and fragile. Luckily things improved and he avoided a blood transfusion.

The surgeons discovered that part of his hip bone had broken at the place where the screws came out of the hardware installed two weeks ago. Apparently Ben's bones are so soft and weak they feel like an elderly person's.

They put in a new plate and wrapped him in a non-removable fibreglass leg and body cast.

From my earlier posts you'll remember that when he first had hip surgery two weeks ago he was in a removable, two-piece clamshell-like cast. The cast wasn't seen as essential, but it now is! Because of the weakness of his bones we can't risk another failure so he'll be in his cast for six weeks.

We had a dramatic but relatively painless descent from our house on the hill this morning.

Last Thursday when Ben was taken back to hospital because of acute pain, the EMS folks placed him on what's called a scoop stretcher, which is two aluminum boards with side handles. They snap together under the patient. This was used because a regular stretcher couldn't be carried up and down our 29 steps.

It was incredibly painful for him to lie on that hard surface, strapped down, and by the time he got to hospital he'd reached his limit. He was lying on his stomach but they wouldn't let him roll over and wouldn't transfer him to a padded stretcher that was standing right beside him.

The orthopedic clinic was bursting at the seams with waiting kids and parents and he screamed while the person at the desk did papework for his x-ray. Then he was wheeled to wait in the x-ray hall but again was not allowed to be unstrapped. He continued to cry and thrash around hard against the straps and metal that bound him.

The x-ray showed a screw was dislodged and my husband is convinced that Ben damaged the hip hardware during that fiasco.

When it was decided Ben would have the revisionary surgery today, I was petrified that the same EMS folks would insist on transporting him on a scoop stretcher. I talked to the dispatchers at length about my concerns.

Our experience this morning was like night and day. When they arrived, the paramedics questioned why the other folks had put Ben on the scoop and instead suggested a canvas material that acted like a hammock when carried by metal rods that were threaded through its sides.

These two gentlemen were so gentle with Ben. As they positioned him on the canvas, to our surprise, five giant men in overalls trooped upstairs and into the bedroom. Were they part of some backup EMS team?

Six men carried Ben down our stairs and at the bottom the hammock was placed on a padded stretcher. D'Arcy accompanied Ben in the ambulance and I followed behind.

I didn't realize who these burly guys were till I drove up the street behind the ambulance and saw a fire truck parked there. Unbeknownst to us, the firefighters had been called in!

As we drove along a busy Toronto street during rush-hour, I realized the ambulance ahead had its hazard lights on, and was going at a snail's pace. A couple of times it swerved way into the oncoming lane, as if to pass an accident, but as I followed I realized the driver was dodging potholes. A number of times it pulled off to the side of the road. Was the driver trying to get my attention? Was something wrong?

Soon I was four cars ahead of it and I began to worry that perhaps Ben was screaming bloody murder because he hadn't been able to have his heavy-duty pain meds on time (we were told the last dose could be given at 6 a.m.). At a red light I put the car in park, got out and ran the few cars back to the ambulance with the narcotics in my hand. I was stunned when the paramedic rolled down the window and explained that Ben was just fine. He was driving that slowly on purpose. He didn't want Ben to feel the bumps.

As soon as we got to the surgical unit they put Ben on a padded stretcher and instead of lifting him up to extricate the canvas material he was lying on, they slid out the rods and said Ben could keep the canvas. They didn't want to disturb him. They also left Ben wrapped in an orange EMS sheet and blanket (we had mentioned earlier that Ben's favourite holiday is Halloween).

Tonight in his room on the unit Ben was sleeping and his face still seemed puffy, but his cheeks were pink.

He managed to crack his eyes open for a second and signed "When off?" as in "When can I take them off" about the two IVs and, of course, the gigantic cast.

It's so hard to see him go through this again and wonder what he's thinking inside. He refused the sedative we hoped would make him drowsy before going to the OR so I again donned the infection-control "bunny suit" and went in.

I liked the anesthetists so much better this time – they really cared. Still, it wasn't easy, Ben cried and I wondered about how forcing these procedures on him was breaking his spirit.

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Grace

Thank you Elizabeth, Ellen, Lianna and Sherry for your comments on Ben's homecoming.

I pulled my first all-nighter in years last night: Ben was in terrible pain. He had been weaned to tylenol and by the time I realized he was crashing and went to get the strong pain medication filled, it was too late.

At one point last night Ben started thrashing around in his cast, trying to roll onto his affected leg. We were frightened he would hurt himself and decided to remove the cast. I neglected to mention in my previous posts that Ben didn't need to be in his body cast medically -- for the purpose of bone healing -- but to prevent him from placing any weight on his affected leg. The surgeon made the cast a removable, clam-shell one and told us if we could be sure he wouldn't put weight on his leg, we could take it off.

Ben's pain continued without the cast and as the early morning hours ticked by I started agonizing over whether removing it was the wrong decision. I spoke to the orthopedic resident on call, but despite his reassurance I was fit to be tied. I e-mailed the surgeon, and imagine my relief when I received this message back from him at 9 this morning:

There is nothing wrong with removing the cast, and it's also normal to still have pain. Just having the incisions alone is painful, and they will hurt when he moves, and he can move even in the cast. If he is still uncomfortable, call the residents on call and they can give you a prescription for a stronger pain medication.

It's normal to worry, and it's normal to have pain after this kind of surgery. It's no problem for you to email me or call the residents on call with any questions. If he has more problems today let me know, but if not, call my office and let Kim know on Monday how he is doing.

I was so relieved, I cried, and I suddenly felt capable that I could support Ben through the pain. It was natural that he had great pain (not a reflection of anything we were or weren't doing), and hopefully it would get a little better, everyday. We were acting in Ben's best interest when we removed the cast because we were afraid he would hurt himself.

I went for a walk with my younger son and it was bright and sunny and everything was in bloom, particularly the hydrangeas. I felt like I had been touched by grace.

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He made it

I wrote this post yesterday, but had trouble with the photo. Ben continues to do well today although he's already asking when he can get "up" and unfortunately that won't be for six weeks! He still has an epidural infusion which is keeping him pain-free and an IV, which he can't wait to be rid of. He was able to sit in a reclining chair for a while and had some pizza tonight.

He made it

My son Ben had his hip and knee surgery today and I'm very grateful to be on this side of it! Here's a picture of him after he was taken from recovery up to the room he'll be in for a few days.

I wrote about how anxious I was before this surgery and many of you sent kind wishes, prayers and encouragement. Thank you for your support!

Ben was receiving excellent pain medication (an epidural) when I left tonight and he was very mellow and comfortable and enjoying watching movies on his portable DVD player (D'Arcy is staying with him). He has a large cast around his trunk (I call it "armor") and a mix of cast and bandaging on his leg that's huge. It was overwhelming to see him in the recovery room because he was also catheterized, which I didn't expect, and had so many wires and leads. Apparently he got very cold during the surgery so they had him under what looked like a giant inflatable mattress that was heated. When we first came to his bed, we couldn't see his head.

Surprisingly, Ben's biggest concern in recovery was whether he could go downstairs to the playroom to use the computer and what he was having for dinner (unfortunately, nothing but clear fluids!) He's also anxious about when the catheter can come out and when he can go home (hopefully Friday).

The day was challenging early on when Ben's surgery was delayed two hours. It wasn't a big deal for Ben, who was absorbed with video games, but it was hard for us old folks.

When it was our turn, I accompanied Ben into the operating room to be put to sleep. It was terrifying for both of us. Ben's always gone on his own in the past, but when he had a recent CAT scan, I was allowed to rub his back while he inhaled the anesthetic medication through a mask. I've never been in an OR before and I was taken aback by how massive it was, the imposing lights, the technology, and all of the frightening "materials" laid out waiting. Ben was scared and refused to get out of his wheelchair. We negotiated that I would bring him a surprise when he woke up later. We went to pick him up and transfer him to the bed and the anesthetist accidentally banged his head with her stethoscope. Unlike the CAT scan folks, who took time with Ben and showed him all the equipment first and cheered him on, she pulled the mask out from behind his head without showing it to him. Of course he balked. I tried putting the mask on Ponda Babba, his favourite Star Wars character (wearing the orange jacket in photo above), but the staff weren't patient and placed it on Ben's face. He resisted and it was horrible to force him to inhale while he shook his head and thrashed around. When he passed out we lay him down and I bent over to kiss his cheek and breathed in the foul smell of the anesthetic. They took his hospital clothes off and it was wrenching to leave him lying there so vulnerable.

I wonder why they aren't able to put children to sleep in a "safe" room and then take them to the OR? So much is done to make the rest of the hospital child-friendly, but it's cancelled out by the trauma of the OR.

The operation took about five hours and the surgeon was pleased with how it went. They removed the benign bony growths, called exostoses, and repositioned and realigned the hip that wasn't growing properly because of the mass inside. The doctor was a very caring person and reassured us that things had gone well.

The medical fellow who spoke to us in the waiting room said dozens of exostoses all over Ben's body showed up on the CAT scan. It's possible the ones they removed today will grow back. However, hopefully that won't be in a matter of months, but years.

The nurses in the recovery room and on the unit were professional, skilled and compassionate.

Thank you so much for all of your well wishes. They are truly appreciated!

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Preparing for surgery

Last weekend, I was weepy. "I don't have enough courage," was all I could tell my husband. I had no patience and snapped at my kids.

I woke in the middle of the night on Wednesday with a sore throat and panicked. I can't be sick, I told myself. I CAN NOT BE SICK. I went to the washroom and grabbed an anti-bacterial mouthwash I'd been given for a prior dental surgery and gargled like a maniac.

I kept eating. Even when I wasn't hungry. I'd go downstairs and take out the lemon loaf and cut myself more slices. I munched on smart popcorn and bars of chocolate. When I'm eating my mind is busy. I can pretend I have something to do and really I'm not worried about the surgery my son is having this Tuesday.

Ben has had more than a dozen operations, but many of them were minor.

His surgery on Tuesday is to remove two benign growths of bone – one sticking out of his knee, the other on the inside of his hip. Both are painful and the one in his hip is pushing it out of of the socket, causing him to limp. We carry him up stairs on our backs now. The knee surgery is straightforward, but the hip one is complicated. I'm not sure how they take out the hip bone so they can excise the growth on the inside, then put it back in, and I don't want to know. The OR is booked from 10:30 to 5, which seems like an awfully long time.

He'll wake up in a spica cast the full length of one leg, around his trunk, and possibly down part of his other leg and he'll be in bed for six weeks, till the cast comes off. This wasn't clear to me until we met with a child-life specialist who came to prepare Ben this morning. I'd been told he couldn't put any weight on his feet, but no one had explained that in practical terms, he'll probably be propped up on a medical bed, unable to use a regular toilet.

Ben will be at SickKids for three days after his surgery. He could go to Bloorview as an inpatient following that for a number of weeks. "When home?" he keeps signing, and I didn't have the heart to tell him about the potentially long stay at Bloorview. "Three days at SickKids," I said, "and then you may go to Bloorview, or you may come home, we'll have to see." It makes me cry to think of him out of his comfort zone in hospital when he can't speak and advocate for himself. I'm hoping we may be able to get a medical bed and other equipment into the house (did I mention we live in a house on a hill up 30 stairs?).

The child-life specialist showed Ben a chart with a row of 10 faces. On one end, a happy face indicated no pain, and on the other, a distraught and crying face indicated extreme pain. When asked to rate the pain in his leg, Ben surprised me by immediately pointing to the most extreme of faces, sad and crying. He's been asking to have his leg "fixed" for months. For a while we were giving him Tylenol every four hours – as directed by a pain specialist – but it didn't seem to have a noticeable impact.

The main goal of the surgery is to alleviate pain. There's always a chance that the boney tumors will grow back. And he may need hip replacements in the future. Ben has pointy bones instead of balls at the end of his hips. When D'Arcy saw them on an x-ray, held up against a picture of a typical kid's hips, he couldn't fathom how Ben walked.

D'Arcy and I had a "black humour" moment the other day. We imagined the surgeon coming to us in the waiting room mid-operation to say he'd discovered something unusual. This happened when Ben was having a surgery to widen his nasal passages. The doctor came out to tell D'Arcy that Ben had anatomy he'd never seen before. He was baffled and said he wouldn't touch the extra tissue he was referring to. Anyway, there's always a fear lurking that surgeons will go in and discover something so structurally unusual that they can't do what they intended, or it doesn't turn out the way hoped.

"I think we'll have to amputate" we imagined him saying, and we laughed, because in a bizarre way nothing surprises us anymore.

Note to self: Try the meditation tape.

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Taking a stand

Isn't this the cutest picture of my son Ben in hospital 11 years ago? Ever since he was an infant, he's had a tuft of hair that insists on sticking up in the centre of his head. Even when in pain, his Richard Scarry videos could elicit a smile. This is a personal essay I wrote about how Ben and his journey changed me, and gave me courage I didn't know I had.

How has your child changed you? Louise

Taking a stand

By Louise Kinross
At last, he sleeps. He floats. His chest fills and empties. His extravagant eyelashes flicker over a dream. He is still.

We've been at the hospital for six hours. Earlier, when nurses struggled to stick an IV into his thread-like veins, he screamed and swung his small, weak arms. D’Arcy and I held him down while they pricked at him, again and again, each poke a stab in my heart.

"It's okay Ben."

"I love you Ben."

"Ben. You need the IV for the operation!"

Now, he lies like deadweight in my lap. He’s four, but the size of a two-year-old. We breathe in tandem, in and out.

Through a glass window I can see the nurses and doctors in the operating room on the other side of the hall.

My son, Ben, has a rare genetic condition called Langer-Giedion syndrome, a random deletion of two genes that probably occurred during cell division. In addition to unusual facial features and protruding ears, he struggles to hear, walk, and speak. We’re in the hospital because he’s stopped growing. Doctors call it “failure to thrive.” Despite a high-fat diet and months of recording every morsel that passes his lips, he’s only 27 lbs.

He's here to have a hole punctured in his stomach so that an artificial feeding tube, known as a gastrostomy – or g-tube, can be placed. It's hoped that nighttime feeds will kickstart his growth. To try to make this palatable to Ben, we explained that he would be getting a new belly-button – he would have two!

Twice, the surgery was cancelled the day before scheduled because of a nursing shortage at the children’s hospital.

The second time I called the patient advocate. "Do you know how traumatizing it is to prepare our four-year-old son for this surgery? We’ve booked off work and arranged care for our two-year-old daughter. What am I supposed to tell my son?"

It's always been hard for me to speak out. I grew up in a British family that was concerned about manners and appearances. My Dad came from a long line of Scotsmen who never complained. I had a wobbly sense of self that relied heavily on the images others held of me. I wanted to be liked. As a result, I smoothed things over when there was a problem. I respected authority and didn’t rock the boat.

That didn’t bode well when I gave birth to a child who was medically compromised.

When Ben was only a day old, a nurse came to my hospital room and lifted him out of my arms. Speechless, I trotted down the hall behind her and into the clinic room, where the pediatrician waited.

“The doctor wants to look at him,” she finally explained – motioning me to the door.

“Alone.”

I walked back into the hall and the doctor slammed the door.

When Ben was close to a year, he developed torticollis – the muscles were too strong on one side of his neck, causing him to sit with his head in a perpetual tilt. “Ben has a rare genetic condition,” I said, as we introduced ourselves to the new therapist assessing him.

“I can SEE that,” she chortled.

Ten days later, as Ben lay on an examining table charming a handful of medical students, the surgeon who was to bring down his testicles pranced into the room and demanded angrily: “What is WRONG with his head?"

I explained that he was born with a head circumference in the 50th percentile, but height below the 3rd, making him look like a little Buddha. He’d already had an ultrasound to rule out hydrocephaly. “What about mental,” the surgeon continued, using his own shorthand for mental retardation. “What about mental?”

The implication that my son was imperfect, flawed, deformed – and lack of the most basic respect for him as a human being – could send me reeling with rage and grief for days. But I didn’t say anything.

Now, I have a four-year-old disabled son who can't speak. I am the only voice he has. So I call the patient advocate to complain about the cancelled surgery. She says the surgeon will call me, but he never does.

Instead, the surgery is rebooked a third time. Finally, the day arrives.

Ben is sprawled over my lap, hooked up to the IV pole and mercifully, after hours of misery, in a deep sleep. D’Arcy has gone to grab a coffee. We’ve graduated from the waiting room to the surgeon’s inner sanctum, an office directly across from the operating room where he’s giving me final instructions.

There's a tap at the door. A nurse sticks her head in, wide-eyed. "I need to talk to you," she says to the doctor.

The doctor leaves, closing the door. Seconds later, he’s back. "I'm sorry, but the surgery has been cancelled," he tells me.

The words are so unbelievable that at first they hang in the air like icicles.

"What?"

"There aren't enough nurses on the floor upstairs."

I look over at the OR and the expectant faces waiting around the table for my boy. I look down at my son.

I picture us taking him home, trying to explain when he wakes up that the surgery never happened. I imagine telling him that we have to do it all over again: nothing to eat or drink that day; the bungled IVs and pain in his bruised arm; the undignified barium up his bottom; the hours of waiting.

I feel the heaviness of his weight sink into me, the lack of resistance, the letting go.

I'm trapped. I can't do this to my son.

"I am not moving until my son has his surgery," I say, speaking with a force that surprises me. "I am not getting up, I am not going home. I am not going to put him through this again."

We sit in silence. Hot tears gather behind my eyelids. I look into his eyes and I can tell he is a good man.

"Let me see what I can do," he says. He picks up the phone and calls a senior executive.

"Thank you," I mouth, as the tears trickle down my face.

The surgeon overrides protocol. Ben goes to the operating room and I go to the waiting room.

I feel depleted and strangely giddy, powerful.

My son may never speak. But he's given me a voice.

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