The Thirty-Year Anniversary: A Betrayal

In a twist of fate, lives collided with my husband’s and missing pieces of our past were revealed.

As a cardiovascular anesthesiologist, he was in a case when the cardiovascular surgeon began chatting. They soon realized they had both trained at the same hospital. I can imagine they likely swapped names of familiar physicians, compared their years of training to determine whether they coincided, and reminded one another of the demands of residency.

And then, in the course of their casual conversation, the surgeon shared a fact about the well-known cardiovascular surgeon he had trained under: “He never looked upon children with Down syndrome as ‘whole people,'” likening them to “guinea pigs.” He believed “those were the good cases for the residents to train on.”

Over the years, I had received many disturbing phone calls from my husband, relaying stories of difficult cases, instances of serious morbidity, and even mortality. I recognized it as a way for him to decompress by talking about the challenges of his day. And so, after years of these calls, I had essentially gotten used to them.

But this one was different. This time he sounded particularly shaken.

The surgeon had no idea the significance of what he had said, and my husband never told him. The well-known cardiovascular surgeon he had trained under had performed our daughter’s first open chest surgery, and her subsequent open heart surgery when she was just two-and-a-half years old.

And he had no idea that our daughter, the one who had had open heart surgery, has Down syndrome.

When my husband repeated the surgeon’s words to me, it was as if a lifetime of what “could have been” flashed before my eyes. I recall being…shaken. Is that the word? Is there a word for the moment you realize you had handed your child over to a monster?

Thirty years later, I’m not over it. Will I ever be?

A few years later, I was still desperately looking for “closure,” as if there is such a thing for something so devastating. I demanded my husband call the cardiovascular surgeon to verify the story. The surgeon had since moved, but I needed to hear his words for myself. I found his address, then his phone number, and took it to my husband. But he would not call, unwilling to infringe upon the surgeon’s privacy, and convinced that it was not in my best interest. And hearing the story once was more than enough for my husband.

I let it go. And yet, to be honest, I never quite did.

As fate would have it, months later, my husband provided anesthesia for a second cardiovascular surgeon. Operating room gab not uncommon, the conversation again turned to residency. Sure enough, he, too, had trained at the same hospital as my husband. He, too, trained under the same well-known cardiovascular surgeon. And he, too, had no idea that idle conversation in the operating room would uncover something of personal significance to my husband: That well-known surgeon “often left the room during the procedure, sometimes to play golf,” leaving the case in the hands of the resident.

This is all likely incredibly disturbing for those of you who have ever handed your children over to another for care. “Primum non nocere.” The Hippocratic Oath. “Do no harm.”

My God, I had handed our daughter over to someone less than human.

Had her outcome been “good,” even “just okay,” this would have been at best “disturbing.” But, for our daughter, the outcome of her surgery was catastrophic.

From my book Teaching by Design (Woodbine House, 2005):

“The severity of Ashley’s complications were not completely revealed until we read her hospital discharge summary. Her blood pressure had fallen even lower than we were originally told. Ashley had experienced a severe ischemic encephalopathy: Not enough oxygen had reached her brain for so long that brain cells had died. Only time would reveal how much she would improve.

 Ashley returned home to us a profoundly different child. Drawn up and tight on the right side of her body, she was fitted with a resting hand splint to try to keep her arm in a more “relaxed” position and prevent her muscles from permanently contracting. In contrast, her left side was limp. Her left eye was turned in. She was unable to perform even the most rudimentary physical tasks, such as holding her head up or moving it from side to side.

 …She had lost the ability to nurse or drink…

 …Ashley’s thermal regulation had also shut down…

 …Ashley was capable of going for days on end without sleep…

 Unfortunately, Ashley’s surgery continues to haunt her. The challenges that she faces that result from Down syndrome are always eclipsed by these additional acquired disabilities. She is legally blind, a result of a decreased field of vision and loss of depth perception. She has a severe language disorder, including expressive aphasia and apraxia, which greatly limits her ability to speak. And she is agraphic which impairs her ability to write. Other health-related hardships have followed, including another open heart surgery to repair her mitral valve, major hip surgery to correct a dislocating hip, arthritis, and chronic pain.”

When I was performing research for the section of my book about Ashley, long before my husband had learned of these new revelations, I had always wondered what had happened to that resident. I had never forgotten his name. I found him and emailed. To be honest, I can’t remember what I wrote, but I do recall I didn’t have the heart to ask him any specifics about our daughter’s surgery. But, even before these recent revelations, I always had an inkling he felt significant responsibility.

For months, all work stopped on my book. I had read medical journal articles wanting to understand the science behind the insult on our daughter’s brain. That was the scientist in me. Articles described what had happened to our daughter down to the cellular level. And it was the first time that it was clear to me that the hospital staff was also complicit by withholding information.

I can retrospectively recognize that I fell into a deep depression. The mother in me couldn’t handle it.

Now, with this new information, I was all but certain that the resident had performed at least some, if not all, of the critical parts of our daughter’s surgery, likely not properly suturing her pulmonary artery, causing excessive bleeding, drop in blood pressure, and subsequent brain damage.

“We never saw her surgeon again after that one conversation in the family waiting room when “all went well.” His chief resident came to our room and cried with us. Staff continued to provide very little information, although we were told, “If she does not improve significantly within two weeks, we don’t know how you will be able to care for her at home.” I was overwhelmed with dread. Though their veiled threat to institutionalize her was never an option, I wanted to scream at them at the top of my lungs!”

Years after her first open heart surgery, and in preparation for her second open heart surgery a decade later, Mayo Clinic informed us that her pulmonary valve had been removed during her first surgery. We had never been told. She continues to be followed to this day for potential life-threatening complications due to the loss of this valve.

The more recent revelations continued to haunt me, and on September 6, 2011, I searched for the resident again. This time I stumbled upon a medical journal article for which he was the lead author, along with our daughter’s original pediatric cardiologist, and the well-known surgeon. I know the date because I immediately emailed my husband. No subject line, just two lines of text: the title of the article, the name of the publication, the page numbers, and the date.

Likely affected by Ashley’s outcome, the chief resident chose to do his research on the efficacy of the procedure that probably caused her stroke. Pulmonary artery banding was the open chest procedure that had been performed on our daughter in early 1985 when she was just three-and-a-half months old. And the removal of the band, and the reanastomosis of her pulmonary artery during her subsequent open heart surgery, is most likely what lead to her brain damage.

The effective dates of the “25-year experience” addressed in the article were May 1962 through April 1987. It surely wasn’t by coincidence that our daughter’s open heart surgery, and the devastating complications, was left out of the study. It was by design.

The date of her surgery was May 19, 1987. Thirty years ago today.

Every so often I look for the obituary of that well-known surgeon. When I see it, I will know he is gone. I will know he has finally been judged by a higher authority.

And maybe I can move on. Maybe I can finally forgive him.

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An Improbable Artist

One could argue that my daughter’s painting is, well, a miracle. And if “miracle” seems an exaggeration then I guess one could suggest “highly improbable.” But no one could debate that it isn’t “amazing!”

AshleyVoss1Art is a wonderful form of expression, from emotions to experiences. But for my daughter, art is special because being able to communicate in any way is a blessing. Due to brain damage following her first open heart surgery when she was just 2 ½ years old, she all but lost the ability to verbally communicate. In fact, she nearly lost her life.

She’s cortically visually impaired. No depth perception and cuts in her visual field from the brain damage. We honestly don’t know exactly what she can and can’t see because she just can’t tell us.

depths

And then there’s the weakness on one side of her body. It’s better than when she was recovering from the brain damage – at the time she had a resting hand splint to avoid contractures in her right arm – but, yeah, it’s still there. Just watch her crack a smile. First one side of her mouth, then the other.

So, you see, picking up a brush, applying paint to it, and putting it to the canvas to create art is for my daughter…remarkable.

We’ve found ways to make it easier for her: a slanted tabletop easel, a recycled egg carton to hold her acrylic paints, and a communication device. But it’s her “vision” that turns it all into art.

And there are times when it defies explanation. Like the time she painted what looked like a black stump…until it was turned horizontally and we realized it was our recently adopted black rescue dog. Or the time she painted two separate canvases. One might have initially thought “nothing special,” until the canvases happened to be placed side by side to reveal a perfectly aligned landscape of what appears to be the Southwest. (Maybe Sedona? She’s visited the Red Rocks. But we may never know for sure.) Or the time she carried a picture from a magazine to her art class a few months after we began eating gluten-free. When she was finished, it looked like the honest-to-goodness hamburger in the picture…lettuce, tomato, bun and all. (I think she was telling us something!)

artThree of her pieces of art have been published in the book A Room of Golden Shells: 100 Works by Artists and Writers with Down Syndrome (Woodbine House, 2013). Yeah, it’s remarkable.

Henri Matisse said, “Creativity takes courage.” Yes, indeed. And she’s got plenty.