Sick Canadian Newborn Whose Parents Want To Use as a Heart Donor Not Terminal

TORONTO, April 9, 2009 (LifeSiteNews.com) - A two month-old child at Toronto's Hospital for Sick Children, described in the media as "dying," has defied doctor's predictions and continued to live after the removal of a respirator. The respirator was removed in the expectation that the child would stop breathing, and that her heart could then be harvested for transplant. Her parents have expressed their disappointment that another child who is being cared for at the hospital will now not receive their daughter's heart.

Kaylee Wallace was born with a condition called Joubert Syndrome, which causes a malformation of the part of the brain that that controls balance and coordination. Among the symptoms of Joubert Syndrome is an abnormal breathing pattern which means that Kaylee requires assistance breathing while she sleeps. But medical literature on the disorder does not describe it as a "terminal condition." Indeed, depending on the severity, some patients recover normal sleep patterns later in life.

He told the Globe and Mail that if he and his wife had known that their child suffered from this condition, they would have aborted.

Because of the Joubert's Syndrome, Kaylee suffers from apnea, a common sleep disorder, especially among adults. But Stephen Drake of Not Dead Yet points out, "Literally thousands of people with apnea in the U.S. and Canada use various devices to assist their breathing when sleeping."

Neither the National Institute of Neurological Disorders and Stroke (NINDS) nor the Joubert Syndrome Foundation describes Joubert's Syndrome as a "terminal condition." Moreover, the National Institutes of Health (NIH) said, "Although some infants have died of apnea, episodic apnea generally improves with age and may completely disappear."

Jason Wallace told media that apart from her difficulties during sleep, Kaylee is a "vibrant baby."

This is NOT an untreatable condition and what is happening here should scare everyone for Obamacare.... for as you can see here it is all about cost... read the last paragraph in this attachment

http://aappolicy.aappublications.org/cgi/content/full/pediatrics%3B111/4/914

snip....

Significant new information has been forthcoming in recent decades on sudden infant death syndrome (SIDS) and apnea during early infancy.1–8 This statement focuses on the epidemiologic aspects of SIDS, the lack of a proven association between episodic apnea and SIDS, strategies for prevention of SIDS, and appropriate use of home cardiorespiratory monitoring.

Apnea monitors were first introduced in the mid-1960s for the management of apnea of prematurity in hospital settings.9 Subsequently, cardiorespiratory monitoring has become widely used in the care of infants with a variety of acute and chronic disorders.

The hypothesis that apnea is the pathophysiologic precursor to SIDS was first proposed in 1972.10 Apnea documented by cardiorespiratory monitoring during prolonged hospitalizations was reported for 2 infants, both of whom were siblings of 3 infants who had died suddenly at home. Both siblings subsequently died unexpectedly after discharge from the hospital. More than 2 decades later, evidence of infanticide for all 5 infants in the original report became known. The apnea theory never has been proven despite extensive independent research in the several decades after that report.1–5 Nevertheless, the home cardiorespiratory monitoring industry, fueled by increasing demand from parents concerned about the risk of SIDS, rapidly developed products aimed at preventing SIDS.11 Despite the absence of a scientific foundation or evidence of efficacy,12,13 home cardiorespiratory monitoring continues to be a common practice in this country.

The American Academy of Pediatrics Committee on Infant and Preschool Child in 1975 recommended that home monitoring to prevent SIDS should be limited to ongoing research studies.14 Subsequently, in the early 1980s a Task Force on Prolonged Infantile Apnea was formed to evaluate the evidence for the theory that apnea is a precursor to SIDS. It concluded in a 1985 statement that "a causal relationship between prolonged apnea and SIDS has not been established."15 The recommendations left the use of home cardiorespiratory monitoring in individual situations to physician judgment.

The costs of home monitoring are substantial. In 1999, 44% of 26 000 infants weighing 501 to 1500 g at birth and cared for in 325 neonatal units within the Vermont Oxford Network were discharged from the hospital on monitors.16 A conservative estimate of the annual cost of monitoring preterm infants weighing less than 1500 g in the United States is $24 million, and this projection does not include physician fees, repeat pneumograms or sleep studies, other ancillary medical costs, or the costs of other populations of infants who are monitored. In this context, the question of efficacy of home monitoring becomes even more important.

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