Wednesday, September 9, 2009

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.


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.


"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.


How beautiful and how true. I'm from an Asian background, and we, too, are quiet and abide by authority. But fighting for my child has brought out my voice as well.

And not just fighting. Also friendship, or maybe that's not the right word, maybe CONNECTING. I've always been a shy person, but now I have no problem chatting with people everywhere (the mall, the doctors office, etc.) who have a child that may be a little different. And then of course my bloggy voice online, too!

Thank you for sharing your story. I sometimes feel burdened by the extra responsibilities that come as a parent of a child with special needs (my daughter has Down syndrome). But I also feel as though I have been invited into a world where I am a witness to grace and where I am developing greater understanding and compassion. I so appreciate the fact that you recognized the doctor's humanity in all this, that he wasn't just a cog in a machine impeding your son's surgery, but a real person. Yours is a story of giving and receiving--with the hospital and with your son. Thank you.

Hi Datri: Thank you for your message! It makes me think that through parenting a child with disabilities, we may naturally drop a lot of the artifice or pretense we used to live with (trying to put forward an image we think others want to see). That not only allows us to be better advocates, but opens us to connecting with others in a way we couldn't before.

Please let us know where we can find your blog!

Welcome! Louise

Hi Amy: Welcome to BLOOM!

You're right about the doctor. He was a good person put in an untenable situation and he stuck his neck out on our behalf, calling the senior executive to tell him he was going ahead in spite of the rules. It just meant that we had to stay longer in the ICU/recovery room, until they could accommodate Ben on the unit. But it meant the world to us.

And I agree that parenting kids with special needs gives us a window into a world that not only holds great challenges, but great joy and grace and beauty.

Do you have a blog?

Hope to hear from you again! Cheers, Louise

Hey Louise,

What a story! I know the pain of anticipating surgeries only to have them cancelled last-minute... Only saving grace is that my son likely doesn't comprehend what is happening.

One time, we were anticipating g-tube surgery only to find out the previous physician had lost his file! So the anesthesiologist wouldn't put him under. The feeding situation was so dire - I just said do it, and do it quick.

Awful moments to muster up courage, yes?


Wonderful story and an important one for all parents to hear. It's difficult to be so rude, so bossy, so pushy, so EVERYTHING, but it has to be done, I guess. Thank you for sharing this with us.

Hi Jen -- Thanks so much for posting!

It's frightening to me how common these situations are -- as you mention your own with the missing file. At what point are we going to the electronic health record? How could O's info not be accessible electronically?

Part of the story I didn't share was that while we were waiting at the hospital, I met another mom whose son was also in line for a g-tube that day. He was about to have a double lung transplant and needed the g-tube first. She told me that his g-tube surgery had been cancelled a few days before, after he was fully prepared for the surgery like Ben -- IV, barium, etc -- just as he was to be taken to the OR. It horrified me to think of the anxiety that kid went through.

Hope you'll visit again! Louise

Hi Elizabeth -- thanks so much for stopping by!

You're right, advocacy comes with the special-needs parenting package -- you can't avoid it, even if you're someone who would prefer not to rock the boat!

I'm moved by your posts about Sophie and the challenge of intractable seizures (humbled, really, by your experience).

I look forward to reading more. Thanks again! Louise

This is wonderful, and so powerful, Louise. I have tears in my eyes.

What a sweet facial expression. Kudos to Louise. The various responses from the hospital staff...words fail me. (Unless there is a true emergency, or dire need to preserve a sterile environment, shutting a door on a parent like that is unacceptable and unprofessional.) Good wishes to Louise and her son.

Thank you for sharing your story. Please share this with your MPP - let them know just what it feels like when a child's surgery is cancelled because of staffing or funding problems. More and more I have found that children's surgery time is being decreased to accommodate the needs of hospitals wanting to have a 'better wait list' number. Perhaps parents and patients advocates need to meet with Hospital Admin to establish guidelines indicating 'when is too late to cancel a child's surgery'. If you haven't been there you just dont know all the things that have to be lined up to support a child, and their family, in getting to, through and recovered from a surgery.
Good luck. And lets hear all readers calling their MPP.

HI Louise,

What a fabulous narrative. You really caputured it all. Parents have to be fierce to advocate for their children in this environment.

It was a skill I did not require in time. After my daughter died at the age of 80 days, and I questioned why she had been sent home without even a blood test 42 hours before death, the Chief of the department demanded to know, "Well, why didn't you challenge the doctor then?" I could not imagine challenging a doctor I knew and trusted for his competency and ethics.

When it comes to disabilty, it seems there is an expectation by the system that if you really care and you really want your child, you will fight like the devil for him. It seems that in the absence of this kind of agression, there is a tacit believe that the parent does not want the child and treatment is withheld.

I found my voice too late, but at least I found it. My essay on Annie's death is published in this month's Hastings Report Journal. It is called, Misgivings.


Thank you for everyone's comments!

Barb, I am really looking forward to reading your piece Misgivings, in the Hastings Report. I will try to get a copy in the Bloorview library so parents can borrow here.

Cheers, Louise

This was good. I never thought of it like this. My daughter can't talk either, I am her voice and you're right, because of her, I speak up.