Living with Trisomy 13, Part 2: The Monitor

[This is the fourth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. It is also the second part of a description of events given by Sam Sansalone. The first part can be found here. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. For further context, please see the introductory post in the series, which can be found here; we'll string together all posts in this series when we have most / all of them up.]

In this video (followed by a transcript) Sam Sansalone continues to describe his experiences trying to keep his daughter, Katya, alive. This part of the story is focused around a monitor necessary to keep Katya alive. The hospital staff clearly recognize that this piece of equipment is needed but seem somewhat reluctant to allow Katya to use the monitor, possibly even arranging a situation where a less medically savvy couple than Sam and his wife would choose to give up the monitor without realizing the consequences (ie. their child quietly choking to death while they slept). Fortunately, the missing monitor is caught and Katya is able to continue living.

As far as we know Katya is the oldest surviving child in Canada to have received a Trisomy 13 diagnosis and Sam closes by sharing his thoughts about why this may be the case.

Watch the video and answer the accompanying poll:

Transcript:

Sam:   I think maybe the most obvious example is, when she was a few days old, she had had some trauma to her throat that was causing secretions. It wasn’t a result of her chromosomal condition, it was just a sequela of a medical problem, and she needed to be suctioned in order to not choke on her own secretions until it healed. So, we knew this – again, my wife is a physician and I’m well enough versed in the medical field that I could understand what was going on – and we knew that this monitor was basically keeping her alive. It was an O2 sat monitor and when it would ring, you know, the alarm would go off; it meant: okay, the secretions are building up, you suction, and then the sats go up and she’s fine. And it was almost like clockwork; it would build up about every 90 minutes or so – but you need the monitor to make sure you catch it. So, when she remained alive longer than they expected, they invited us to move from this regular hospital neonatology room – of six beds I think it was – to a private room with a couch and you could sleep there right beside the baby, very private, it was an excellent environment to be in in that stressful situation for a parent, so we thought this was being graciously given to us and we heartily accepted it. We moved into the room. They moved Katya into the room in her isolet – and the monitor was missing. And any other parent who didn’t understand what an O2 sat monitor was, and why it needs to be there, would have not known. Had we not caught that – well, before I say that, the story of how we got the monitor is maybe even more interesting: Katya came in, no monitor; I asked the nurse, “there’s no monitor, where’s the monitor?” and she said “just a minute”, she walked out, she came back shortly, she said “Dr. Hellman,” who was the Director of Neonatology at the Hospital Sick Children at the time, “Dr. Hellman says there’s no monitor in this room.” Which was was bizarre – that was keeping her alive. And I said, “well, she’ll die without the monitor,” and so she said “just a minute”, she leaves, comes back and says, “Dr. Hellman says that either you go back to the other room, or there’s no monitor; if you want the monitor there’s no monitor in this room.” And so I said, “fine, we’ll bring Katya back to the other room!” It was just a bizarre dynamic. So she again leaves, comes back with the monitor. They were trying to kill her. It’s that simple. I know it sounds extreme, but that’s what it comes down to. And I think the point I would make of the matter is that had that been done to any other kid who does not have a developmental disability prospect, it would be attempted murder. The doctors would be directed out of the hospital in hand-cuffs. But, here we go, this is tolerated. And things only spiraled from there. I was told seven minutes; I didn’t have a proper script so, yeah, I think I’m well over it. There are many other examples, but just to summarize: you know, Katya would have died that night – within an hour and a half of us falling asleep, we wouldn’t have heard her choking, she would have died. And my guess is a lot of these kids have died [in such a manner]. And so, when I said Katya’s the oldest one alive in the country with full trisomy 13, it should not be. It shouldn’t be. If you look at the statistics in the U.S., where they’ll give the treatment and the interventions as long as you give the money, there are a lot more. The statistics do no match what’s going on in other centers. And when Rachel and I saw a series of these – this is just one and unfortunately I don’t have time to do the rest, unless you want to ask questions and I’ll be happy to describe them, but there were several of these instances and it became so clear to me and Rachel. I remember (Rachel’s my wife) I remember the moment when it really hit us and yet another thing, we exposed yet another thing that they were doing to try to basically end her life. I remember we were in shock; we looked at each other and we said, almost in unison I think, “they’re trying to kill her.” It was – and I can’t describe that feeling: you’ve got a child that’s vulnerable medically, socially; you’re at an institution that’s reputedly the number three pediatric medical care institution in the world, and they’re trying to kill your daughter.

Dick Sobsey:   Thank you, Sam.

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5 thoughts on “Living with Trisomy 13, Part 2: The Monitor

  1. I had an experience similar to Sam. When my daughter (Annie, T13) was 3 weeks old, she was on a very small amount of oxygen and also on monitors in the hospital. The doctors said that she would “get stronger” without the oxygen. They said, “just take the oxygen canister around and if she turns blue, give her a little oxygen”.

    I did what the doctors said because they were the experts.
    Two days later, I decided to reattach the monitors just to see what Annie was doing. Sure enough she was constantly desaturating up and down.

    A respiratory therapist came along and said that desatting like that was not good and if Annie needed a small bit of continuous oxygen, then she needed it. He and I reattached the oxygen.

    When the docs came they didn’t say anything.

    The next battle was getting the monitors for home use. I have since discovered that the Ministry of Health Assistive Devices Program specifically excludes infants who suffer from apnea from having a monitor if they have a “pre-existing condition” (ie a genetic condition) Apnea of prematurity is very common among babies like Annie and Katya.

    If the government will not pay for any portion of the cost of a monitor rental (minor), it is difficult to believe that the infant will receive life-saving treatments or surgery.

    Some people might think that trisomy 13 infants are a different matter because they are at one end of the spectrum, but the thing is that once the choosing begins, and rationing strategies increase, there is no problem for the doctors to play the same “games” with other infants.

    They will be very well practiced at it.

    The elimination of a newborn with disabilities saves the system BIG time in medical and social service costs. That is why these infants are a greater target than other vulnerable people.

    Thanks for sharing your story, Sam.

  2. Pingback: The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life « Art of Possibility

  3. Pingback: The Modern Pursuit of Human Perfection: The Full Story « What Sorts of People

  4. Pingback: Modern Pursuit of Human Perfection talks: now captioned « What Sorts of People

  5. My God. I can bearly think. I have been tortured for the last three years of my life because I have always felt that the hospital didn’t do what they were suppose to do to save my son’s life. His name was Jeremiah Nigel and he too was diagnosed with trisomy 13. The doctor’s were cruel and heartless and definitely felt as though his life wasn’t worth the time of day. Now you mean to tell me he could’ve had the heart surgery and survived!! Who are they to play God? Mr. Sansalone, please e-mail that study and report. I’d really appreciate it. You really don’t understand what this has to me physically and mentally. I need closure. My story is also on the trisomy 13′s website. Someone please help me. Thank you and God Bless

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