What interested me is that they could not afford the £9k to have their embryos checked for the faulty gene. I can't see why they would have to pay for that... aside from, in my view, that it is the kind of thing that the NHS is for, the cost of treatment for their children would likely be a lot more that £9k, so it doesn't make financial sense either. Of course it may be the DM is wrong... but seems daft to me that the screening was not done.
The NHS wouldn't provide the IVF as the mother already had three children from a previous marriage so they had to go private. Reading between the lines, there was a chance that with screening they could end up with no viable embryos (i.e. all could be carrying the faulty gene with the clinic saying that they would be destroyed) and no money for a second round of IVF. Going for the cheaper, non-screened, option meant that no embryos would be destroyed, but any child resulting from the IVF could be carrying the faulty gene.
This is a tricky one, isn't it. I really don't know what I would have done in his position.
The neighbours need to butt out though, it's got nothing to do with them.
The NHS wouldn't provide the IVF as the mother already had three children from a previous marriage so they had to go private. Reading between the lines, there was a chance that with screening they could end up with no viable embryos (i.e. all could be carrying the faulty gene with the clinic saying that they would be destroyed) and no money for a second round of IVF. Going for the cheaper, non-screened, option meant that no embryos would be destroyed, but any child resulting from the IVF could be carrying the faulty gene.
Makes sense, but even so I should have thought that, given the high potential cost of treatment for the child the charge should have been waived (and to be honest the tests encouraged).
Obviously this little girl is going to have medical issues to deal with that most children don't, but is there any indication that she won't life a fulfilling life?
I'm willing to bet this girl with grow up in a loving, stable home with lots of different opportunities. I'd say one of the major issues is how other people will accept her. You'd think that 30 years after her father was born silly attitudes about people who are a bit different would have changed.
Obviously this little girl is going to have medical issues to deal with that most children don't, but is there any indication that she won't life a fulfilling life?
I'm willing to bet this girl with grow up in a loving, stable home with lots of different opportunities. I'd say one of the major issues is how other people will accept her. You'd think that 30 years after her father was born silly attitudes about people who are a bit different would have changed.
I can't see attitudes towards the disabled ever changing
Those who grow up in homes where their parents have been ignorant ****s towards the disabled are likely to go on to be like that themselves the they'll have kids and the attitude will continue, unless any of them grow brain cells and realise their attitudes are wrong
I can't see attitudes towards the disabled ever changing
Those who grow up in homes where their parents have been ignorant ****s towards the disabled are likely to go on to be like that themselves the they'll have kids and the attitude will continue, unless any of them grow brain cells and realise their attitudes are wrong
Sadly I think you're right when it comes to a lot of people. Ignorance breeds ignorance
I wouldn't say he was cruel, selfish yes but not cruel
It sounds from the article as though there must have been a chance the child would be 'normal' as it was not discovered that the baby had the syndrome until the mother had her scans.
What was he to do? Abort? Is refusing to abort selfish? Maybe he thinks all life has value and why shouldn't he? He went on to marry and have a child = that matters.
My partner's niece has EDS, she was originally told it was type 1, but they now think it's type 3. She has Asperger's, too.
None of these disable her as much as having a bonkers, attention-seeking mother who relishes having a disabled child and the opportunities it gives her to play Mother Teresa. She makes the girl much worse by encouraging her not to bother with her physio and creating a situation where the girl is totally dependent on her.
My partner's niece has EDS, she was originally told it was type 1, but they now think it's type 3. She has Asperger's, too.
None of these disable her as much as having a bonkers, attention-seeking mother who relishes having a disabled child and the opportunities it gives her to play Mother Teresa. She makes the girl much worse by encouraging her not to bother with her physio and creating a situation where the girl is totally dependent on her.
Yeah a lot of the symptoms are cross over ones, hard to get the right type sometimes
Y'know, I was getting ready to be all controversial by saying that I thought it would be cruel to produce a kid with "severe facial deformities".
I mean, if you have some condition that means you have a hugely compromised quality of life, what is the point in creating a kid with the same disadvantages?
But then I actually read the story, and looked at the pictures.
So, the guy's deaf and looks a bit weird. So f**king what?
It's not like he was born with no eye-sockets or without a jaw or with some other horrific deformity which means he'll only ever be a burden to the rest of society so bloody good luck to him and any kids he has.
My main issue would be why that condition is actually classed as "severe" at all.
I dunno if there are other, more serious, issues which aren't noticeable but I've seen plenty of stranger looking folks in the local pub on a Saturday night.
I think if I was in their situation I wouldn't have taken the risk of passing on the condition. If it was 50/50 then it was too likely to happen to risk it in my opinion, particularly as it could have been more severe with the child having no face!
I would have gone with the option to detect and destroy any faulty embryos - I think if I understand correctly they could have afforded this but one one go rather than two if they went with standard IVF.
I wouldn't call the parents cruel though or judge them for what they did as it is a very hard decision to make.
At our 20 week scan we were told our baby had a disability, and whilst waiting for specialist screening we were left in the dark. All kinds of syndromes and conditions were mentioned as possible causes. We were offered medical termination, but we knew it was something we would only consider if her life would have been of no quality. We wouldn't want her to spend her life on a dialysis machine or in an incubator, only to lose her before her first birthday. Her disability turned out to be a skeletal one, only affecting her legs. She will have a quality of life equal to any other child, after she's had her surgery of course. But my own mother turned to me and said 'I wouldn't be brave enough to do what you're doing. I couldn't do it.' Meaning that in our position, she would have aborted her baby. I'm sure there are other parents who would or have chosen a termination over a disabled child. I don't judge them, but I can't ever imagine ever rejecting a child because they are imperfectly made.
I know every parent wants their child to be born healthy and normal. I'm sure that a few years ago I would have looked at a baby with our daughter's condition, Fibular Hemimelia, and thought, 'oh, poor her. How awful.' I didn't realise then that you can be deformed, disabled or whatever, and still be absolutley perfect. I don't look at my little girl and see a condition or a diasbility - I see an amazing bundle of joy who is the best thing that ever happened to me. That's what this father understands. Regardless of how she came into the world, she should be cherished. And she will be.
And for the record, there's a slight chance her FH might be genetic. Still waiting on test results. We were told that if we accidentally got pregnant we should contact the hospital for early scans, presumably so that we would have the choice of an earlier, 'easier' termination if our second child had inherited the condition. My reply was that a scan wouldn't make any difference. I wouldn't go as far as deliberatly creating a child I knew 100% would be disabled, but I would never reject one if they could have a good quality of life.
I wouldn't do it. I would think myself selfish to put a child through that knowing I didn't have to but it's their choice.
I think I might also resent that my parents chose to let me live like that.
Depending on how you look at things, it might also be considered "selfish" to choose not to have a kid who might go on to discover a cure for cancer or turn out to be the next Steven Hawking simply because you thought they look a bit odd.
Again, it's not like this kid is likely to have a hugely compromised quality of life so she's free to achieve anything she sets her mind to.
It's not like she's doomed to a life on a ventilator or stuck in a hospital bed.
Should people refuse to have children when their families have a history of cancer?
Half of Angelina Jolie's maternal family died from cancer and she had operations as a preventive measure since she carries a certain gene, so was she wrong to give birth to three children who might carry said gene?
I don't have children, I never had that burning (mother) desire; to me, this story illustrates some people's reactions when a person isn't "perfect". They are, unfortunately, an easy target for bullies.
It was a brave decision - they look a lovely family, I am thrilled for them and wish them all the best.
At our 20 week scan we were told our baby had a disability, and whilst waiting for specialist screening we were left in the dark. All kinds of syndromes and conditions were mentioned as possible causes. We were offered medical termination, but we knew it was something we would only consider if her life would have been of no quality. We wouldn't want her to spend her life on a dialysis machine or in an incubator, only to lose her before her first birthday. Her disability turned out to be a skeletal one, only affecting her legs. She will have a quality of life equal to any other child, after she's had her surgery of course. But my own mother turned to me and said 'I wouldn't be brave enough to do what you're doing. I couldn't do it.' Meaning that in our position, she would have aborted her baby. I'm sure there are other parents who would or have chosen a termination over a disabled child. I don't judge them, but I can't ever imagine ever rejecting a child because they are imperfectly made.
I know every parent wants their child to be born healthy and normal. I'm sure that a few years ago I would have looked at a baby with our daughter's condition, Fibular Hemimelia, and thought, 'oh, poor her. How awful.' I didn't realise then that you can be deformed, disabled or whatever, and still be absolutley perfect. I don't look at my little girl and see a condition or a diasbility - I see an amazing bundle of joy who is the best thing that ever happened to me. That's what this father understands. Regardless of how she came into the world, she should be cherished. And she will be.
And for the record, there's a slight chance her FH might be genetic. Still waiting on test results. We were told that if we accidentally got pregnant we should contact the hospital for early scans, presumably so that we would have the choice of an earlier, 'easier' termination if our second child had inherited the condition. My reply was that a scan wouldn't make any difference. I wouldn't go as far as deliberatly creating a child I knew 100% would be disabled, but I would never reject one if they could have a good quality of life.
I agree, and what a good post, so nicely put. I always say I wouldn't have my daughter any other way because any other way she wouldn't be her.
I seem to recall in the 90s and 00s when there was still an egalitarian feel to the country before it became tribal and narcissistic, it was more tolerant.
Maybe we were still operating along JudeoChristian lines...
Should people refuse to have children when their families have a history of cancer?
I think that ethically you should try to minimise the risk:
1). If there is gene therapy - take it
2). If IVF can lessen the risk - use it
3). If you have a condition which is common within your community be screened for it before you decide to have children etc.
4) and if the condition is severe (not this, nor most cancers) consider not having a child
The problem here is that he chose not to use existing methods to make it more likely that he had a child with better health.
Do you think that was acting in the potential child's best interest?
I think parents ought to do all they can to make their child's life positive and healthy.
Comments
Okay.
He's 9, had 21 operations so far & many more to come.
Oh bless him
The NHS wouldn't provide the IVF as the mother already had three children from a previous marriage so they had to go private. Reading between the lines, there was a chance that with screening they could end up with no viable embryos (i.e. all could be carrying the faulty gene with the clinic saying that they would be destroyed) and no money for a second round of IVF. Going for the cheaper, non-screened, option meant that no embryos would be destroyed, but any child resulting from the IVF could be carrying the faulty gene.
The neighbours need to butt out though, it's got nothing to do with them.
Makes sense, but even so I should have thought that, given the high potential cost of treatment for the child the charge should have been waived (and to be honest the tests encouraged).
I'm willing to bet this girl with grow up in a loving, stable home with lots of different opportunities. I'd say one of the major issues is how other people will accept her. You'd think that 30 years after her father was born silly attitudes about people who are a bit different would have changed.
I can't see attitudes towards the disabled ever changing
Those who grow up in homes where their parents have been ignorant ****s towards the disabled are likely to go on to be like that themselves the they'll have kids and the attitude will continue, unless any of them grow brain cells and realise their attitudes are wrong
Sadly I think you're right when it comes to a lot of people. Ignorance breeds ignorance
It sounds from the article as though there must have been a chance the child would be 'normal' as it was not discovered that the baby had the syndrome until the mother had her scans.
What was he to do? Abort? Is refusing to abort selfish? Maybe he thinks all life has value and why shouldn't he? He went on to marry and have a child = that matters.
This.
What a weird world it would be if everyone was born perfect.
My partner's niece has EDS, she was originally told it was type 1, but they now think it's type 3. She has Asperger's, too.
None of these disable her as much as having a bonkers, attention-seeking mother who relishes having a disabled child and the opportunities it gives her to play Mother Teresa. She makes the girl much worse by encouraging her not to bother with her physio and creating a situation where the girl is totally dependent on her.
Yeah a lot of the symptoms are cross over ones, hard to get the right type sometimes
I mean, if you have some condition that means you have a hugely compromised quality of life, what is the point in creating a kid with the same disadvantages?
But then I actually read the story, and looked at the pictures.
So, the guy's deaf and looks a bit weird. So f**king what?
It's not like he was born with no eye-sockets or without a jaw or with some other horrific deformity which means he'll only ever be a burden to the rest of society so bloody good luck to him and any kids he has.
My main issue would be why that condition is actually classed as "severe" at all.
I dunno if there are other, more serious, issues which aren't noticeable but I've seen plenty of stranger looking folks in the local pub on a Saturday night.
http://news.bbc.co.uk/1/hi/health/1916462.stm
I agree but that ship has sailed in this instance.
I would have gone with the option to detect and destroy any faulty embryos - I think if I understand correctly they could have afforded this but one one go rather than two if they went with standard IVF.
I wouldn't call the parents cruel though or judge them for what they did as it is a very hard decision to make.
I know every parent wants their child to be born healthy and normal. I'm sure that a few years ago I would have looked at a baby with our daughter's condition, Fibular Hemimelia, and thought, 'oh, poor her. How awful.' I didn't realise then that you can be deformed, disabled or whatever, and still be absolutley perfect. I don't look at my little girl and see a condition or a diasbility - I see an amazing bundle of joy who is the best thing that ever happened to me. That's what this father understands. Regardless of how she came into the world, she should be cherished. And she will be.
And for the record, there's a slight chance her FH might be genetic. Still waiting on test results. We were told that if we accidentally got pregnant we should contact the hospital for early scans, presumably so that we would have the choice of an earlier, 'easier' termination if our second child had inherited the condition. My reply was that a scan wouldn't make any difference. I wouldn't go as far as deliberatly creating a child I knew 100% would be disabled, but I would never reject one if they could have a good quality of life.
I think I might also resent that my parents chose to let me live like that.
Depending on how you look at things, it might also be considered "selfish" to choose not to have a kid who might go on to discover a cure for cancer or turn out to be the next Steven Hawking simply because you thought they look a bit odd.
Again, it's not like this kid is likely to have a hugely compromised quality of life so she's free to achieve anything she sets her mind to.
It's not like she's doomed to a life on a ventilator or stuck in a hospital bed.
Half of Angelina Jolie's maternal family died from cancer and she had operations as a preventive measure since she carries a certain gene, so was she wrong to give birth to three children who might carry said gene?
It was a brave decision - they look a lovely family, I am thrilled for them and wish them all the best.
Maybe we were still operating along JudeoChristian lines...
WHich seems to follow on from ideas promoted by Shulamith Firestone...
1). If there is gene therapy - take it
2). If IVF can lessen the risk - use it
3). If you have a condition which is common within your community be screened for it before you decide to have children etc.
4) and if the condition is severe (not this, nor most cancers) consider not having a child
The problem here is that he chose not to use existing methods to make it more likely that he had a child with better health.
Do you think that was acting in the potential child's best interest?
I think parents ought to do all they can to make their child's life positive and healthy.