All the actual questions have derived from the medical evidence supplied by both St Mary's and Great Ormand Street hospital teams during the court hearing. Now with an appeal appending I feel the Laws Lords and Judges needs to ask more searching questions about Mary's right to life and her perceived quality of life. Consensus of time that Mary and Jodie could live together "I do not know how long the twins will survive without surgical intervention. However, with the benefit of longer follow up to date, I would estimate the chance of survival to beyond six months to be greater than the 10-20% likelihood previously suggested ... I can not provide an estimate for an "upper limit" for life expectancy but this estimate would gradually increase with time if the present satisfactory progress from the point of view of Jodie's cardiac performance is maintained." says Cardiologist. *1 "Although my impression is they (Mary and Jodie) can live together for many months, or perhaps even a few years, it does not seem likely that they can survive in this fashion long-term." says Gt. Ormond Street's Pediatric Surgeon *2 Q. Is there any real consensus between the St Mary's and Gt. Ormand St teams how long Mary and Jodie could live together? Real Reasons for separating Mary and Jodie as soon as possible "Jodie's attachment to Mary means that she is not going to be able to walk or to stand, she is going to need to lie or to be carried wherever, and that will therefore limit her ability to develop as a normal child whereas if she survives this operation and walks, as she is expected to, she can have a relatively normal or as close to normal free existence." Says Surgeon. *3 Surgeon says "If the twins remain united, then, as already set out, Jodie's heart may fail in three to six months or perhaps a little longer. But it will eventually fail." *4 Q. Is part of the decision to undertake a early separation between Jodie from Mary is so that Jodie is able to develop "normally" in the same way as non-disabled children do? Q. How appropriate is it for medical professionals to use child developmental tests with perceived intellectual, emotional, physical and sensory norms when deciding whether both twins should have the right to life? Q. Where is it laid down in law that babies like Mary can be killed if their development is physically, emotionally and intellectually different from babies who are perceived to be normal? Relationship between child's normal development and predicted quality of life Neonatologist said "I think my perception of the quality of Mary's life is that it would be so poor that I do not feel that it is a life that she will enjoy. I think her limitations would be so severe that inter-reactions with and development and progress would be so severely interrupted, prevented really, that in my view it is acceptable to acknowledge that Mary should be allowed to die." *5 Q. Where is the evidence, which shows a link between a baby's "normal" development and predicted quality of life? Psychological affects upon the surviving twin "Evidence was given that the literature suggested ... that the separation is usually well accepted without any serious or other psychological consequences from that separation" *6 Q. If assuming that Jodie will grow up being normal then how can the psychologists know for sure that Jodie would not suffer psychologically knowing her sister had died because she was considered too disabled for the teams to give her chance for treatment which may save her? "In the worse scenario, yes, it is possible that she (Jodie) will never walk, she may need a wheelchair, she may need an appliance in the form of a crutch or a brace or something like that but it is not expected." Says the Surgeon *7. Q. How will Jodie's identity as potentially a "strong" disabled person be affected (assuming the medical professionals worse outcome from the operation(s)) , knowing her sister was left to die because she was disabled before separation? Possibility of considering Mary for a Heart and Lung Transplant Miss Parker Q.C. on Jodie's behalf asked the surgeon a "very theoretical question" whether Mary could be kept alive if she were attached to a heart lung machine immediately after the common aorta was severed. He agreed that it was possible but he went on to say ... It is a holding situation whatever is your final operation that is going to lead to a separate viable entity. Here for the weaker of the twins, unless there was a heart and lungs available for transplant instantly there would not really be all that much point, and then one has to take into context the rest of the problems which the should has .. which really do not suggests that there is any point in taking on a heart and lung transplant for this child" *8 Q. In theory what would be the best outcome of this heart and lung transplant for Mary? Q. If the Heart and Lung Transplant has never been performed on such a young infant then how do the teams know if it will fail in the first place without giving it a go? Great Ormand Street agrees with St Mary's Neonatologist that Mary's has little/no lung and poor heart functioning. Gt. Ormand Street confirmed that Mary ". Is not capable separate survival because of grossly impaired cardiac performance and no useful lung function, with no prospect of recovery. (Without a heart and lung transplant?) *9 St Mary's Neurologist describes the degree of abnormality as "Very severe indeed ... It is possible(?) that this child is progressively developing hydrocephalus, which might be (?) to it's detriment. Corpus callosum in later childhood is associated with seizure disorders / epileptic fits. It is also associated with developmental delay and learning difficulties. *10 Q. How will having Corpus callosum (associated with seizure Disorders / epileptic fits, developmental delay and learning difficulties) adversely affect Mary's ability to have a successful heart and lung transplant assuming that concerns over her heart and lungs will be overcome by this operation? "Heart and lung transplantation has not been performed in early infancy to my knowledge; even if it was technically feasible, donor organs of appropriate size are not available." *11 Q. If an heart and lung transplant has never been performed and it's the only option for Mary's survival then is it better to take the risk which may give her life than just to condemn her to death? Q. Is Mary on the Lung and Heart Transplant list so that she at least has a chance of life? Q. With babies dying of the similar size to Mary around the U.K, Why could not the doctors use their lungs and heart with parents permission? A (Children) Judgment Case Number B1/2000/2969 22nd September
Prepared by Simone Aspis |