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My daughter's name is Katya Sansalone.
She's now 7, which is extraordinary because that apparently puts her in the position of
being the oldest one alive in the country with her condition, which is full trisomy13.
We don't know that for sure, but two hospitals believe that.
And I was really moved by Wendy's story, second time I'm hearing it now, and you know
there really are similar themes in a lot of these stories.
I think in our case, as she mentioned, it was about making the right decision and
fighting a system that largely just does not want to give access to medical resources for
these children who are developmentally disabled or have prospects of being profoundly developmentally disabled.
Katya is an extraordinary little girl. She's certainly developmentally disabled, but she's one of the happiest people you'll ever meet.
She experiences joy and gives joy to people around her; strangers even.
She's a real example of joie de vivre.
And, the way I see it, she's just another kid and the problem that she experiences is
that she's not allowed to be viewed that way and treated that way.
Going now to the issue of where the big ethical challenges were with her, it was pretty much right from the beginning.
Once they had a diagnosis for her, they made a determination without telling us that this was someone whose life should not be saved.
What they told us in the beginning, however, was we had a choice to make.
She had a heart condition, which was common for kids with this chromosomal defect, that
she would die from if she didn't have a certain kind of lifesaving cardiac surgery that
is now routine--tetralogy of fallot repair--but they couldn't recommend it because of
quality of life issues.
And we didn't know much about trisomy 13 or trisomy13; my wife's a physician but in a
completely different specialty and just remembered very little about it from medical
school, so we were relying on what we were being told by the physicians and her
colleagues, some of whom, you know, she would have brushed shoulders with in that hospital.
And what we were being told turned out to be false.
And it wasn't by coincidence or by error. It was intentional.
We were told that the range of outcomes for these kids was that: virtually no life
expectancy, within months they die, that any that do survive--very rare ones that do
survive--beyond that don't have a life that we consider of quality, that they used
examples of kids and people who go through lives not smiling, not recognizing people, not
knowing their family, not interacting socially.
And the bizarre thing about this is that there was research 7 years before that, we later
found out, that completely dispelled this myth.
And yet they were propagating it on an active basis, in a way that would have led to a
decision that would have killed our daughter, by withholding of vitally needed medical interventions.
That was just part of it.
So they, when we found that out, which was by very interesting means, there was one of
the resident neonatologists, I remember he had a clipboard and I remember the study
because the title was bold, and when I saw that he had this study on his clipboard and
went to look at it and he referred to it saying "look, we've told you about the natural
history of this, it's dismal," he made it sound like there was no hope,
there was no point in choosing to give her cardiac surgery,
so when I went to look at it, he literally turned the clipboard away from me,
withholding information that would have been vital.
I got that study from the author himself, a doctor in Utah who is one of the eminent researchers in this area of medicine, after doing some research.
I communicated with Dr. Utah and he faxed those very studies right to
the neonatology department to my attention--
went right past the people who were trying to prevent me from seeing this, and what
that document revealed was a study, now well-established; it was about 7 years old--
that it's not true, it's all myth, the range of outcomes is very wide.
The ones that survive infancy do have quality of life that's defined by any reasonable
ethical measures.
And once I got that information, and realized that these are happy kids if they survive
infancy, there was no question in my mind that she deserved to have and should have the
lifesaving cardiac surgery.
Why would I deny Katya a medical intervention that was needed if I wouldn't deny Gemma,
my older daughter, or Caleb, my son --they're not developmentally delayed-- why would I
discriminate against her?
It made no ethical sense whatsoever to me.
And at that point, when they realized that we were deciding in that direction, all of a
sudden it wasn't our choice anymore.
So, first we had the choice: "it's going to be a very difficult choice and we'd hate to
be in your position, but this is what we suggest," and then when we make the decision
it's: "well, you don't actually have a choice after all." So we had to fight them and it
took about three weeks of debate.
We involved the bioethics community-- or they actually initiated the involvement of the
bioethics community within the hospital, and then within the hospital they went to the
broader Ontario bioethics community and at one of the meetings they had with a good
number of attendees they had an informal vote after a discussion about this case and they all voted unanimously with us.
So as a result of that, that really gave the impetus for us to force the hospital to give
her this lifesaving cardiac surgery, which had never been done before in Canada strangely.
There were plenty of opportunities to do it, but apparently no parent had at that point
been aware, and we could easily see why: the wool is pulled over the eyes of the parents
and they're encouraged to basically dispose of these kids that are going to be burdens to
the system.
That's sort of the overt side.
There was a covert side that's more sinister, I think, than that.
Because at least this was an open debate and people taking what I think are absurd
positions, but at least there was a discussion about it and a resolution.
What was happening behind the scenes was worse.