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Old 10-08-2012, 09:36 PM   #11
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Make sure they know about the organization Now I Lay Me Down To Sleep as well. This is a group that will come and do pictures of the family/baby if the worst should happen. We lost a little boy at almost 24 weeks to T13 and they were wonderful! I treasure those pictures!!

As for the other about the midwife, I have no clue but I will be thinking of them!

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Old 10-09-2012, 07:39 AM   #12
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Smile Re: Edward's syndrome and midwives

Hello.. I think seeing a midwife for home birth typically would be great how ever not for this momma who is execting a child with Edwards syndrome otherwise known as trisomy 18.(extra 18th chromosome) my son has this and he is 11 years old now medical book have not been updated since the 60's and everything reads death and Drs try to talk you in to abortions or not to do anything at birth..it's heart breaking the things a dr will tell you or keep things from you in hopes you will do nothing.,they look at our kids as a drain.

We were told kayden would do nothing and know nothing if he lived.. Kayden signs mom and dad,no yes will say momma he goes on rides and is very aware of his surroundings. You would never read about t18 and then think kayden had this. I'm now a advocate for all trisomy and we have a Facebook page with just a tad under 1 thousand families on it and our web page should be launching here soon. I go speak at bioethics conferences and help talk to the Drs of some of the kids. I would love for you to give this mom my information as I would love to help give the HOPE..by connecting them to our large group of parents you could be helping give this baby a fighting chance. We are seeing that the more kids that are given a chance and are being treated the more do amazing. Kayden was born not breathing but had a heart beat, he did have a coup,e surgeries including a trach placed for a while but you would never know.he is amazing in every way.. You can see him on YouTube by searching on there "kayden trisomy 18" or memyma also if you search on Facebook trisomy families you will find us and I'm listed on Facebook as Marta Johnson McClanahan
wwwtrisomyfamilies will be up and running soon my number is 218-316-0976 and my email is martamcclanahan@hotmail.com
Thank you
Marta McClanahan
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Old 10-09-2012, 09:35 AM   #13
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Re: Edward's syndrome and midwives

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Originally Posted by Trisomy18momma View Post
Hello.. I think seeing a midwife for home birth typically would be great how ever not for this momma who is execting a child with Edwards syndrome otherwise known as trisomy 18.(extra 18th chromosome) my son has this and he is 11 years old now medical book have not been updated since the 60's and everything reads death and Drs try to talk you in to abortions or not to do anything at birth..it's heart breaking the things a dr will tell you or keep things from you in hopes you will do nothing.,they look at our kids as a drain.

We were told kayden would do nothing and know nothing if he lived.. Kayden signs mom and dad,no yes will say momma he goes on rides and is very aware of his surroundings. You would never read about t18 and then think kayden had this. I'm now a advocate for all trisomy and we have a Facebook page with just a tad under 1 thousand families on it and our web page should be launching here soon. I go speak at bioethics conferences and help talk to the Drs of some of the kids. I would love for you to give this mom my information as I would love to help give the HOPE..by connecting them to our large group of parents you could be helping give this baby a fighting chance. We are seeing that the more kids that are given a chance and are being treated the more do amazing. Kayden was born not breathing but had a heart beat, he did have a coup,e surgeries including a trach placed for a while but you would never know.he is amazing in every way.. You can see him on YouTube by searching on there "kayden trisomy 18" or memyma also if you search on Facebook trisomy families you will find us and I'm listed on Facebook as Marta Johnson McClanahan
wwwtrisomyfamilies will be up and running soon my number is 218-316-0976 and my email is martamcclanahan@hotmail.com
Thank you
Marta McClanahan
Wow, thank you Marta! I will definitely pass on your information. Their OB gave them no useful information, and you're right--everything they've heard/read is devastating. Hope is so important to parents, thank you for helping give that!
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Old 10-09-2012, 09:40 PM   #14
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Re: Edward's syndrome and midwives

I would prefer to have a midwife if I knew that my baby wouldn't make it past birth. I would certainly want a care provider who I trusted, that's for sure. My mom has horror stories about the OB with her too-premature-for-life (at the time) twins.
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