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Comment #1788606 by Arlette Lyons

Arlette Lyons Nov 9th 2013, 12:41 PM #

Just to repeat our situation Eimear, Our campaign has noting to do with Down Syndrome or any other special needs…. I gave birth to my beautiful little daughter Freya 4 months ago, she is the light of our lives. We were told at the 12 week scan that she may have down syndrome or some other complications. I asked was it fatal and they said they did’nt think so. I proceeded with my pregnancy knowing that we could possible have a baby with Down syndrome this was ok with us. Freya was born weighing 5lb 4 , She has Pierre Robin syndrome, chrosome abnormailty 4q-35 deletion, a small hole in her heart, a cleft palate, hip dysplasia and a cyst on her brain….She has alot of medical needs but she is not in pain and hopefully she can led a fulfilled life. She is my little hero and loved by her big brothers me my husband and all our family. The pregnancy that I ended well she had zero chance of survival she had Patau’s along with other issues. I remember reading a story of a little boy who had pataus and died 89 days old ..some may think he was givn a chance but in reailty he spent all his 89 days in hospital going through painful treatment .. there was only one way his story was going to end and that was death. For me for my baby I could not let that happen. I could not watch my baby be born to only have to struggle for my own solace..I was the life support machine to MY baby and I made the descision to switch the machine off…I will never forget Skye and she will always be part of our family. And as for Freya she is our little hero with her special needs or not.

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Read the article where this comment appeared:

Women who travelled to UK for terminations to bring case to United Nations

Women who travelled to UK for terminations to bring case to United Nations

Terminations for Medical Reasons (TFMR) and the Centre for Reproductive Rights believe there have been human rights violations.

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    Favourite Eimear Smith
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    Nov 9th 2013, 10:46 AM

    I would be of the same opinion that TFMR should be facilitated here. I hate the thought of abortion for convenience/lifestyle choices especially given all the contraception methods available. However a friend of mine was told on three occasions that her baby had Down’s Syndrome. Baby was born without Down’s Syndrome. There is always a risk ( no matter how small) of incorrect medical diagnosis, there are so many factors to consider for the individuals involved. Some of the comments above are flippant and inhumane from both sides.

    21
    Favourite TheLoneHurler
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    Nov 9th 2013, 11:48 AM

    As long as the diagnosis was 100% sure. Could not bear to think of a doctor(s) mis-diagnosing. Can doctors come up with a system to make sure mis-diagnosis cannot happen? Are scans and tests now-a-days good enough to ensure this?

    7
    Favourite Eimear Smith
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    Nov 9th 2013, 12:14 PM

    I know Down’s isn’t a fatal fetal abnormality. My cousin has Down’s and is a huge part of all our families lives and the life and soul of any party! My point was that errors can be made that influence decision making. I’m pretty sure however in the cases of TMFR that extensive documentation checks and second opinions have to be completed before any intervention is carried out, reducing the risk of error.

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    Favourite Arlette Lyons
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    Nov 9th 2013, 12:41 PM

    Just to repeat our situation Eimear, Our campaign has noting to do with Down Syndrome or any other special needs…. I gave birth to my beautiful little daughter Freya 4 months ago, she is the light of our lives. We were told at the 12 week scan that she may have down syndrome or some other complications. I asked was it fatal and they said they did’nt think so. I proceeded with my pregnancy knowing that we could possible have a baby with Down syndrome this was ok with us. Freya was born weighing 5lb 4 , She has Pierre Robin syndrome, chrosome abnormailty 4q-35 deletion, a small hole in her heart, a cleft palate, hip dysplasia and a cyst on her brain….She has alot of medical needs but she is not in pain and hopefully she can led a fulfilled life. She is my little hero and loved by her big brothers me my husband and all our family. The pregnancy that I ended well she had zero chance of survival she had Patau’s along with other issues. I remember reading a story of a little boy who had pataus and died 89 days old ..some may think he was givn a chance but in reailty he spent all his 89 days in hospital going through painful treatment .. there was only one way his story was going to end and that was death. For me for my baby I could not let that happen. I could not watch my baby be born to only have to struggle for my own solace..I was the life support machine to MY baby and I made the descision to switch the machine off…I will never forget Skye and she will always be part of our family. And as for Freya she is our little hero with her special needs or not.

    74
    Favourite Shanti Om
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    Nov 9th 2013, 6:05 PM

    Eimear.
    With respect, do you not think that if a woman wants to have the baby and she is told there is a fatal foetal abnormality she is going to want a second, third, even perhaps fourth opinion?
    When you’re being told something this tragic – you will do anything you can to have a doctor say “actually we were wrong – your baby is perfectly healthy”.

    Every woman seeking TFMR was wishing that they didn’t have to. Every woman seeking TFMR wishes that one of those doctors could tell them their baby would survive. The worries of misdiagnosis are already being addressed out of sheer hope against hope on the part of the parents.

    27
    Favourite Mary Kavanagh
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    Nov 15th 2013, 6:48 PM

    Sorry Eimear, you must not have read this article properly. We’re not discussing Down’s syndrome which is a chromosomal anomaly and absolutely nothing to do with fatal foetal syndrome. Fatal foetal syndrome means that the baby is unviable outside the womb except for a very short time. This is not the case with Down’s syndrome except in the case of very serious complications.

    4
    Favourite Eimear Smith
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    Nov 15th 2013, 9:15 PM

    There’s no need to be sorry Mary. I read the article. I completely understand the difference between the two. My point was that my friend was told her unborn baby had Down’s yet when born her baby did not have Downs. Sometimes medicine gets it wrong. tragic to think that healthy babies are aborted mistakenly. Although as I mentioned in my previous comment I’m sure there are plenty of failsafes in place to prevent it.

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    Favourite Mary Kavanagh
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    Nov 16th 2013, 12:26 AM

    When I asked for the test for Down’s I was told that there was a very slight chance of miscarriage and that there can be a very small margin of error. Which is why I refused the test and sweated it out, because there is no way of knowing from scans. Also with the risks of miscarriage it would have been a brave woman who’d have asked for a second test, unless there’s been a less invasive test developed recently. I’m glad that it turned out well for your friend.

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    Favourite Eimear Smith
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    Nov 16th 2013, 7:43 AM

    I get the feeling you have doubts about the information I’m giving. My friend lives abroad, in the states, she was told by 3 consultants that her baby had Down’s. They have different markers for identifying Down’s Syndrome over there. She refused amniocentesis on the basis that, no matter what, it was her baby and she and her husband would love her anyway. So I guess like you she too sweated it out.

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    Favourite Mary Kavanagh
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    Nov 16th 2013, 10:39 PM

    Hi Eimear, I don’t in the least doubt your story. Tests can be wrong – and I think the only sure way is amniocentesis which is so invasive that your friend was probably right to refuse. I certainly wouldn’t have had that done unless there was a very good reason. I absolutely agree that Down’s syndrome is not a reason to have an abortion as it’s not classed as a fatal foetal abnormality. I’m so pleased that your friend’s child is well and leading a happy life with her loving parents.

    1

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