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This is a very skewed piece. The second paragraph is actually a lie. The doctors who originally told the Sidelskys their son would have a cleft palate encouraged them to have the baby - only one doctor (albeit a senior prenatal scanning expert) advised an abortion and his manner seems to have been horrific. Peculiar that that is the ONLY part of the very much longer interview given in the Guardian last Sunday that is highlighted here. Some quotes from the original interview should serve to demonstrate how biased this piece of journalism is. "Because our son’s cleft was picked up at 22 weeks, we were told right away that we could still have an abortion. (The legal limit for abortions is 24 weeks; beyond that, they are permitted for “severe” disabilities such as Down’s syndrome but not for mild ones such as a cleft or club foot.) Our immediate instinct was that we shouldn’t. The doctors we spoke to that afternoon, while stressing that the choice was ours to make, were broadly positive about our son’s prospects. They said that surgery for clefts had come on a great deal in recent decades, and would continue to improve. Although clefts had, in the past, often been a genuine blight right up into adulthood, nowadays they were in most cases eminently fixable. Ultimately, it was likely that our son would lead a “normal” life. So, to begin with, that was our position." " At the same time, and adding to our sense of confusion, we found genuinely useful guidance hard to come by. Because parents have the right to abort a child up to 24 weeks, the medical profession, we found, adopts a stance of neutrality: we were told many times that whatever decision we made “would be the right one”, which didn’t actually make deciding easier. Friends and family, while supportive, broadly took a similar view: the decision was ours to make; no one envied us. And so, at first, we set great store by what the doctor said. Here at last, it seemed, was someone willing to cut through the bland circumlocutions and communicate what no one else was brave enough to spell out. But our trust in him, I came to realise, was misplaced. The fact that he was an expert in prenatal scanning didn’t mean that he had a better idea than we did about what being the parent of a child with a cleft actually involved. " "Second, we received some advice – via email – from another doctor, the surgeon father of a colleague of mine. An abortion, he wrote, seemed an “extreme measure” and would be a “very sad outcome”. The large majority of clefts really weren’t that big a problem. And he worried about the “psychological damage” a termination might inflict on my wife. I was deeply affected by his words, so different in tone from those of the senior doctor. Instead of focusing on the potential negatives of our child’s condition, his main concern was the effect an abortion would have – the regret it might occasion, the happiness and fulfilment it might cause us to miss out on. He was writing, it seemed to me, more in love than in fear. And his email made me realise that the senior doctor didn’t have a monopoly on honesty. After all, this doctor had no reason to sugar-coat his advice." "Hugo was born at home, as had always been our plan. (His cleft, we were assured, made no difference to the birth.) It was a long and difficult labour – nearly 20 hours – but the final stages went smoothly. When Hugo made his way out into the birthing pool, and the midwife lifted him out of the water, the right side of his face was facing away from us both. Gudrun hurriedly asked the midwife: “Can you see his lip? Does he look OK?” Unable at this stage to see his cleft, I remember, absurdly, thinking for an instant that the scans must have been wrong after all, that his face was unblemished. “He’s gorgeous,” the midwife said, and then turned him round so that we could see him properly.". "About a decade ago, cleft treatment in the UK was overhauled. Instead of local hospitals treating patients on an ad hoc basis, regional cleft units were established in major hospitals. The care, for the first time, became properly joined up and specialised. The result is that Britain today is a world leader in the treatment of clefts. There are few better places in which to be born with one. It also means that for all his misfortune in having a cleft, Hugo is fantastically lucky. He has access, for free, to the best possible treatment, and will do for as long as he needs it. I sometimes think about what his life would have been like had he been born in a poorer country, or in Britain but at an earlier stage of its development. As his parent, I find this hard to contemplate." The rest of the quite extensive interview (probably the last 80% ) deals with the work of Smile Train - a charity which works to repair the cleft palates of children in the third world. It is a pity that this op ed did not concentrate on this as it was the most important part of the story and the main thrust of the interview.
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Quoting "I will tell you three things, First I had a Daughter born with a cleft, and a grandson born with a cleft and if a Doctor had told any of us the CRAP that one of the so-called Doctor told these folks, I would beat the living crap out of him. I don't really care if you call this a "skewed piece" or not the so-called person who calls himself a Doctor should have his license to practice Medicine revoked" No one is defending the attitude or the conduct of the ONE doctor whose actions I described as " horrific". What I posted was the positive side of the same story and I pointed out that the rest of the interview was about - "the work of Smile Train - a charity which works to repair the cleft palates of children in the third world. It is a pity that this op ed did not concentrate on this as it was the most important part of the story and the main thrust of the interview.". From your personal experiences I am sure you would applaud the work of this charity and that of Operation Smile; both of which do sterling work treating thousands of children born in developing countries who would not normally be able to access surgery to correct the effects of being born with a cleft palate.
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11/1/2015 3:18 am |
Deciding whether to have an abortion or a baby, especially a child with a birth defect requiring many painful, scary, and expensive surgeries and probably a huge scar on their face, is the personal decision of the mother. The father and the doctor can give her their advice, but it's up to the mother to decide. If she decides on abortion, I don't think other people have any right to try to make the mother feel guilty about her decision.
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