Q12 of Q&A

A: We need to be further along in watching her development before we can have a more reliable sense of the probable outcome. In terms the most favorable trisomy 13 cases on record, a few do achieve life expectancy into adulthood, but with mental capacity profoundly limited up to approximately that of a one-year-old with some two-year-old skills. Most of these children die before birth. About half of the ones that survive to birth die within a week of that, so in that sense Katya has already beaten the odds. Many more still die within the first year. The 5-10% of livebirths that make it to the age of one year represent those most likely to live with somewhat reduced medical complications and have some chance of reaching their teen years or adulthood. Katya doesn't so far seem to be particularly vulnerable to having central apneas, which statistically account for most of the later (non-cardiac-related) deaths. The second most common (non-cardiac) cause of later death with these children is respiratory infection, which is one of our bigger long-term concerns with Katya. She so far doesn't seem to have the GE reflux problem which is common among these kids and can lead to dangerous aspiration pneumonia. Katya also has a problem with one of her kidneys, and has an annular pancreas, although these do not seem to be among the larger concerns. For the trisomy 13/18 patients that do survive past infancy, there is a high probability that they can lead a happy and love-filled life, although with an uncertain number of life-expectancy years and with a severely limited mental capacity within a range equivalent to about 6 to 12 months of age, a few achieving some additional skills that would be more typical for an average two-year-old. The ability to walk independently is very rare with this disorder, there being just a few cases on record for trisomy 13 (although none on record for trisomy 18). Despite all those limitations, however, the survivors among these children can continue to learn new skills throughout their lives, do not regress, generally can sit up, and they interact with their families on an emotional level much like a normal infant would -- they recognize and love their family members and friends, and remain very happy kids if accorded many of the same natural opportunities and dignities as given to normal children. Could Katya know, give, and experience love and joy in a meaningful way, despite having trisomy 13? Most definitely yes, considering the achievements of other kids with such challenges. In fact, we already see manifestation of the seeds of love that have been planted in her.


				*For Friends of Katya Maria Sansalone* *Q12 of Q&A*



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		Q: What is Katya's prognosis in terms of her own trisomy 13 condition?



		A: We need to be further along in watching her development before we can have a more reliable sense of the probable outcome. In terms the most favorable trisomy 13 cases on record, a few do achieve life expectancy into adulthood, but with mental capacity profoundly limited up to approximately that of a one-year-old with some two-year-old skills. Most of these children die before birth. About half of the ones that survive to birth die within a week of that, so in that sense Katya has already beaten the odds. Many more still die within the first year. The 5-10% of livebirths that make it to the age of one year represent those most likely to live with somewhat reduced medical complications and have some chance of reaching their teen years or adulthood. Katya doesn't so far seem to be particularly vulnerable to having central apneas, which statistically account for most of the later (non-cardiac-related) deaths. The second most common (non-cardiac) cause of later death with these children is respiratory infection, which is one of our bigger long-term concerns with Katya. She so far doesn't seem to have the GE reflux problem which is common among these kids and can lead to dangerous aspiration pneumonia. Katya also has a problem with one of her kidneys, and has an annular pancreas, although these do not seem to be among the larger concerns. For the trisomy 13/18 patients that do survive past infancy, there is a high probability that they can lead a happy and love-filled life, although with an uncertain number of life-expectancy years and with a severely limited mental capacity within a range equivalent to about 6 to 12 months of age, a few achieving some additional skills that would be more typical for an average two-year-old. The ability to walk independently is very rare with this disorder, there being just a few cases on record for trisomy 13 (although none on record for trisomy 18). Despite all those limitations, however, the survivors among these children can continue to learn new skills throughout their lives, do not regress, generally can sit up, and they interact with their families on an emotional level much like a normal infant would -- they recognize and love their family members and friends, and remain very happy kids if accorded many of the same natural opportunities and dignities as given to normal children. Could Katya know, give, and experience love and joy in a meaningful way, despite having trisomy 13? Most definitely yes, considering the achievements of other kids with such challenges. In fact, we already see manifestation of the seeds of love that have been planted in her.



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