Q5 of Q&A

A: Katya experienced pain and discomfort like other infants would. There is no doubt that all kids who undergo heart bypass surgery experience some significant suffering at times. Coming out of surgery there are all kinds of invasive tubes and lines going into the patient's body, some of which can be quite uncomfortable or painful. This is in addition, of course, to the fact that their little hearts and chests have had to be cut open and put back together. Pre-surgery there can be invasive procedures like numerous intravenous line insertions and side effects from special medications, all of which can add considerably to any discomfort that the child may already be experiencing just from being so bedridden. Also, there is a restricted range of stimulation -- these babies are tethered to medical equipment and therefore to that degree deprived of, for example, some of the natural neonatal experience as compared to normal infants that get to experience the benefits and stimulation of more and richer environments plus unencumbered handling by the ones that love them. Then there is the possibility of post-operative complications that can increase and extend issues of pain and discomfort.

In Katya's case, she had been spared some of the greater extremes of suffering that some infants have had to endure specifically around open heart surgery -- she was out of intensive care in fairly good time post-surgery compared to some that are under intensive care for many weeks or even months. But there is no doubt that she had significant pain and discomfort to contend with like all kids that undergo this kind of heart repair -- chromosomally challenged or not. Numerous children are routinely permitted to undergo this level of suffering in order to achieve the goals of heart repair.

Oddly, in Katya's perioperative stay at the hospital it was a very severe diaper rash (from diarrhea side effects apparently initially from aggressive antibiotics and magnesium supplementation) that seemed to have caused her the most sustained outwardly-manifested acute pain -- not the surgical and other interventions that had been eased by morphine. After more than a week of that evidently preventable diaper rash suffering (avoidable by diaper-less air exposure and frequent washing), a dermatology consult had finally been ordered following our repeated-throughout-the-week suggestions for one, and then with the right prescription Katya's pain was much relieved within just two days of starting the new topical medication.

Although that particular diaper rash cleared up nicely, unfortunately a new and more persistent diaper rash soon appeared after Katya was home, evidently due to the development of a lactose intolerance (possibly the result of her post-operative lowered nutrition) causing very severe and prolonged diarrhea. Nothing dermatological worked on that second rash, and it stayed with her for what became a very intense, suffering-filled month-and-a-half until medical workers figured out the lactose intolerance theory and took her off breast milk in favor of a lactose-free formula. The formula change stopped the diarrhea within a day or two, but unfortunately the 'non-natural' formula in other ways did not seem to independently sit well with her in that she then had to endure what appeared to be very intense and very frequent gas pains for weeks on end -- until this was mitigated evidently by simple but clever Ovol dosing-technique advice from the same hospital dietician that had earlier figured out the lactose intolerance connection. (Astonishingly, none of the many doctor specialists that had been involved during those two-and-a-half difficult months had figured out either the lactose intolerance connection or the later apparent value of the special dosing technique -- it appears at least some of them were distracted by their effectively dismissive theories around Katya's trisomy instead of focusing on the direct causes of her specific GI symptoms. So hats off to the hospital dietician for her insightful input and undistracted problem solving that seems to have mitigated most of these GI difficulties -- see the "Acknowledgments" page linked above.) Beyond that, there has also been some additional, although less frequent, abdominal pain that we're not yet sure of how to explain except that it might possibly be a motility issue related to hypotonia, or possibly just a bigger gas problem that cannot be fully addressed with the present medicating. In any case, the frequency of the severe abdominal pain was mitigated, evidently thanks to the dietician's clever and open-minded analysis.

Backtracking chronologically again, in terms of other forms of suffering perioperatively while in the hospital, her most chronic, crying-inducing discomfort occurred when she had been intentionally deprived of normal bolus feeds for most of a week as a precaution that evidently turned out to be unnecessary as shown only days later by an X-ray feeding study that proved Katya was not aspirating. Even that feeding study itself had been delayed because of the false theory about aspirating. And a key reason they were worried about aspiration was because of wrong, red-herring theorizing about Katya's trisomy.

Some (actually many) of the physicians that have been involved just could not focus purely on the task of diagnosing without being unduly influenced or sidetracked by Katya's trisomy -- to the point of excluding more obvious, more appropriate explanations. So, ironically, some of the more outstanding sources of suffering experienced by Katya actually had nothing directly to do with her heart surgery or trisomy, and more to do with errors or slowly-arrived-at diagnoses.

Also of note, a fundamental first-stage cause from which some of these complications later stemmed may be the respiratory bugs Katya contracted while in the hospital, their most plausible source being cross-contamination through, for example, inadequate hand-washing by hospital workers. (Most workers were very diligent with handwashing, et cetera before touching her, but we observed some glaring compromises even while we were present.) Further, it is conceivable that the extended intubation and extended BiPAP use may have been needed because of such cross-contamination and could have even directly precipitated or exacerbated the degree of hospital-endogenous bacteria respiratory infection complications, that in turn caused the lung collapsing episodes, which in turn led to the extended uncomfortable hospital stay and need for aggressive antibiotic, etc. medications, which in turn may have precipitated the initial problematic diarrhea as well as inspiring the wrong theories about aspiration, and so on.

The bottom line is that the pain and discomfort from the surgery itself was patently much less than these other factors that might have been mostly avoided.

The big question is, what is the minimum quality of life outcome that justifies putting these kids (who are individuals with constitutional human rights like everyone else) through the suffering of heart bypass surgery? With otherwise normal kids, there is never a debate as to whether or not to do the surgery -- it is routinely done. But when severe mental and physical handicaps are expected in the child's future, as in Katya's case, there are many who vehemently oppose the provision of any reparative treatment resources, and instead push for withdrawal of all life support in what could in reality amount to a passive euthanasia. We, as Katya's parents, believed that there was an ethical basis to ensure full treatment in her case. Following a very challenging, controversial, and lengthy investigation and debate, our position was supported by the highly respected Bioethics department of Toronto's Hospital for Sick Children. That is how Katya got the opportunity for infant heart surgery despite having trisomy 13 -- apparently a medical first in Canada. Even though preoperatively nobody could guarantee that Katya would make it through the perioperative challenges, we felt she properly had the right to that opportunity like other children capable of love and joy -- qualities that were realistically within her reach if she could survive infancy. The general surgical statistics, incidentally, did favor the probability that she would survive the surgery with a successful heart repair. And she had already beaten the odds in terms of basic neonatal survival with her chromosomal defect -- thereby having a reasonable prospect of becoming an essentially happy kid if given the chance. So we made sure she had the chance.


				*For Friends of Katya Maria Sansalone* *Q5 of Q&A*



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		Q: Did she experience much pain and discomfort?



		A: Katya experienced pain and discomfort like other infants would. There is no doubt that all kids who undergo heart bypass surgery experience some significant suffering at times. Coming out of surgery there are all kinds of invasive tubes and lines going into the patient's body, some of which can be quite uncomfortable or painful. This is in addition, of course, to the fact that their little hearts and chests have had to be cut open and put back together. Pre-surgery there can be invasive procedures like numerous intravenous line insertions and side effects from special medications, all of which can add considerably to any discomfort that the child may already be experiencing just from being so bedridden. Also, there is a restricted range of stimulation -- these babies are tethered to medical equipment and therefore to that degree deprived of, for example, some of the natural neonatal experience as compared to normal infants that get to experience the benefits and stimulation of more and richer environments plus unencumbered handling by the ones that love them. Then there is the possibility of post-operative complications that can increase and extend issues of pain and discomfort. In Katya's case, she had been spared some of the greater extremes of suffering that some infants have had to endure specifically around open heart surgery -- she was out of intensive care in fairly good time post-surgery compared to some that are under intensive care for many weeks or even months. But there is no doubt that she had significant pain and discomfort to contend with like all kids that undergo this kind of heart repair -- chromosomally challenged or not. Numerous children are routinely permitted to undergo this level of suffering in order to achieve the goals of heart repair. Oddly, in Katya's perioperative stay at the hospital it was a very severe diaper rash (from diarrhea side effects apparently initially from aggressive antibiotics and magnesium supplementation) that seemed to have caused her the most sustained outwardly-manifested acute pain -- not the surgical and other interventions that had been eased by morphine. After more than a week of that evidently preventable diaper rash suffering (avoidable by diaper-less air exposure and frequent washing), a dermatology consult had finally been ordered following our repeated-throughout-the-week suggestions for one, and then with the right prescription Katya's pain was much relieved within just two days of starting the new topical medication. Although that particular diaper rash cleared up nicely, unfortunately a new and more persistent diaper rash soon appeared after Katya was home, evidently due to the development of a lactose intolerance (possibly the result of her post-operative lowered nutrition) causing very severe and prolonged diarrhea. Nothing dermatological worked on that second rash, and it stayed with her for what became a very intense, suffering-filled month-and-a-half until medical workers figured out the lactose intolerance theory and took her off breast milk in favor of a lactose-free formula. The formula change stopped the diarrhea within a day or two, but unfortunately the 'non-natural' formula in other ways did not seem to independently sit well with her in that she then had to endure what appeared to be very intense and very frequent gas pains for weeks on end -- until this was mitigated evidently by simple but clever Ovol dosing-technique advice from the same hospital dietician that had earlier figured out the lactose intolerance connection. (Astonishingly, none of the many doctor specialists that had been involved during those two-and-a-half difficult months had figured out either the lactose intolerance connection or the later apparent value of the special dosing technique -- it appears at least some of them were distracted by their effectively dismissive theories around Katya's trisomy instead of focusing on the direct causes of her specific GI symptoms. So hats off to the hospital dietician for her insightful input and undistracted problem solving that seems to have mitigated most of these GI difficulties -- see the "Acknowledgments" page linked above.) Beyond that, there has also been some additional, although less frequent, abdominal pain that we're not yet sure of how to explain except that it might possibly be a motility issue related to hypotonia, or possibly just a bigger gas problem that cannot be fully addressed with the present medicating. In any case, the frequency of the severe abdominal pain was mitigated, evidently thanks to the dietician's clever and open-minded analysis. Backtracking chronologically again, in terms of other forms of suffering perioperatively while in the hospital, her most chronic, crying-inducing discomfort occurred when she had been intentionally deprived of normal bolus feeds for most of a week as a precaution that evidently turned out to be unnecessary as shown only days later by an X-ray feeding study that proved Katya was not aspirating. Even that feeding study itself had been delayed because of the false theory about aspirating. And a key reason they were worried about aspiration was because of wrong, red-herring theorizing about Katya's trisomy. Some (actually many) of the physicians that have been involved just could not focus purely on the task of diagnosing without being unduly influenced or sidetracked by Katya's trisomy -- to the point of excluding more obvious, more appropriate explanations. So, ironically, some of the more outstanding sources of suffering experienced by Katya actually had nothing directly to do with her heart surgery or trisomy, and more to do with errors or slowly-arrived-at diagnoses. Also of note, a fundamental first-stage cause from which some of these complications later stemmed may be the respiratory bugs Katya contracted while in the hospital, their most plausible source being cross-contamination through, for example, inadequate hand-washing by hospital workers. (Most workers were very diligent with handwashing, et cetera before touching her, but we observed some glaring compromises even while we were present.) Further, it is conceivable that the extended intubation and extended BiPAP use may have been needed because of such cross-contamination and could have even directly precipitated or exacerbated the degree of hospital-endogenous bacteria respiratory infection complications, that in turn caused the lung collapsing episodes, which in turn led to the extended uncomfortable hospital stay and need for aggressive antibiotic, etc. medications, which in turn may have precipitated the initial problematic diarrhea as well as inspiring the wrong theories about aspiration, and so on. The bottom line is that the pain and discomfort from the surgery itself was patently much less than these other factors that might have been mostly avoided. The big question is, what is the minimum quality of life outcome that justifies putting these kids (who are individuals with constitutional human rights like everyone else) through the suffering of heart bypass surgery? With otherwise normal kids, there is never a debate as to whether or not to do the surgery -- it is routinely done. But when severe mental and physical handicaps are expected in the child's future, as in Katya's case, there are many who vehemently oppose the provision of any reparative treatment resources, and instead push for withdrawal of all life support in what could in reality amount to a passive euthanasia. We, as Katya's parents, believed that there was an ethical basis to ensure full treatment in her case. Following a very challenging, controversial, and lengthy investigation and debate, our position was supported by the highly respected Bioethics department of Toronto's Hospital for Sick Children. That is how Katya got the opportunity for infant heart surgery despite having trisomy 13 -- apparently a medical first in Canada. Even though preoperatively nobody could guarantee that Katya would make it through the perioperative challenges, we felt she properly had the right to that opportunity like other children capable of love and joy -- qualities that were realistically within her reach if she could survive infancy. The general surgical statistics, incidentally, did favor the probability that she would survive the surgery with a successful heart repair. And she had already beaten the odds in terms of basic neonatal survival with her chromosomal defect -- thereby having a reasonable prospect of becoming an essentially happy kid if given the chance. So we made sure she had the chance.



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