13/05/11Some issues with ethics and an update
Another busy week,
Nate has been full of snot, and by now you will know what that means..... But no he's doing ok at the minute!
We put the house on the market, desperate for more space. So now having to find a mortgage, ours is unhelpfully with northern rock and they keep telling us politely to naff off even though weve never missed a payment.
Awful day Wednesday. CCN ( community nurse) came as usual to check Nate, the result of his nasal swab taken Monday was in but when they rang the lab the lab wouldn't give them the result saying it had been passed on to the gp. Which, obviously, suggested he'd tested positive for something! Rang gp and receptionist said they were contacting Nates resp consultant for "clarification" and then would be in touch. Eh? Getting quite stressed by this point, worrying about what he had and the potential for disaster. I contacted the consultant's secretary who knew nothing. Contacted gp again and was told they'd chase it up and ring me back. Should it really be this difficult to get test results on a vulnerable child? Hmmm
In the mean time I picked up my daughter from pre school. An hr later she was on the loo and crying with blood on her knickers. Que panic! Took her to walk in centre and then children's ward. She told me shed crashed a scooter into a fence and banged her girlie bits against the screw bit half way up the scooters metal pole. My poor bairn. So I had several hrs of spanish inquisition as drs tried to get thea to change her story- "you fell off your bike didn't you thea" " you hit the handlebars didnt you thea". Complete nightmare . But she's ok now!
gp then rang back. What a snotty woman wanting to know who did the swab and why, why we had nurses coming out, how long they've been coming out etc. Nice to see she was up to date with my sons history! Told me Nate was positive for RSV, but that it was a common virus and not an issue!!!! I had to point out my son had been seriously ill with it before Xmas!!! FFS! But so far, he's managing. God bless our suction machine!
Today we had the dreaded genetics clinic appointment. We dread it as every time we see the geneticist she has some other life limiting syndrome to test for. This time her collegues had two things to test for, neither of which she thinks he has. Therefore we declined the tests. Im sick and tired of MRIs, ultrasounds and x rays, of DNA tests and pictures being taken. Apparently they had suggested these things based on his unusual appearance, I covered Nates ears and told him not to listen at that point. She then told us of a huge study we could be part of, where Nates whole DNA and genes would be read and matched to known syndromes. They are studying undiagnosed children with
developmental delay. I asked if the information would be used to discover new syndromes etc. She said yes eventually.
I am unsure whether to participate. It worries me when databases have lists of genes and what they cause. I worry
about the pursuit of perfection, and the pressure on mothers to abort less than perfect children. It is an ethical minefield I want no part of. it is one thing to screen embryos of parents who carry severe life limiting conditions to allow then to have a healthy child and another thing entirely to abort a foetus who might be what society decrees as less than perfect .
Nate has been full of snot, and by now you will know what that means..... But no he's doing ok at the minute!
We put the house on the market, desperate for more space. So now having to find a mortgage, ours is unhelpfully with northern rock and they keep telling us politely to naff off even though weve never missed a payment.
Awful day Wednesday. CCN ( community nurse) came as usual to check Nate, the result of his nasal swab taken Monday was in but when they rang the lab the lab wouldn't give them the result saying it had been passed on to the gp. Which, obviously, suggested he'd tested positive for something! Rang gp and receptionist said they were contacting Nates resp consultant for "clarification" and then would be in touch. Eh? Getting quite stressed by this point, worrying about what he had and the potential for disaster. I contacted the consultant's secretary who knew nothing. Contacted gp again and was told they'd chase it up and ring me back. Should it really be this difficult to get test results on a vulnerable child? Hmmm
In the mean time I picked up my daughter from pre school. An hr later she was on the loo and crying with blood on her knickers. Que panic! Took her to walk in centre and then children's ward. She told me shed crashed a scooter into a fence and banged her girlie bits against the screw bit half way up the scooters metal pole. My poor bairn. So I had several hrs of spanish inquisition as drs tried to get thea to change her story- "you fell off your bike didn't you thea" " you hit the handlebars didnt you thea". Complete nightmare . But she's ok now!
gp then rang back. What a snotty woman wanting to know who did the swab and why, why we had nurses coming out, how long they've been coming out etc. Nice to see she was up to date with my sons history! Told me Nate was positive for RSV, but that it was a common virus and not an issue!!!! I had to point out my son had been seriously ill with it before Xmas!!! FFS! But so far, he's managing. God bless our suction machine!
Today we had the dreaded genetics clinic appointment. We dread it as every time we see the geneticist she has some other life limiting syndrome to test for. This time her collegues had two things to test for, neither of which she thinks he has. Therefore we declined the tests. Im sick and tired of MRIs, ultrasounds and x rays, of DNA tests and pictures being taken. Apparently they had suggested these things based on his unusual appearance, I covered Nates ears and told him not to listen at that point. She then told us of a huge study we could be part of, where Nates whole DNA and genes would be read and matched to known syndromes. They are studying undiagnosed children with
developmental delay. I asked if the information would be used to discover new syndromes etc. She said yes eventually.
I am unsure whether to participate. It worries me when databases have lists of genes and what they cause. I worry
about the pursuit of perfection, and the pressure on mothers to abort less than perfect children. It is an ethical minefield I want no part of. it is one thing to screen embryos of parents who carry severe life limiting conditions to allow then to have a healthy child and another thing entirely to abort a foetus who might be what society decrees as less than perfect .
No comments:
Post a Comment