Trisomy 13 Awareness ~ Patau Syndrome

http://www.livingwithtrisomy13.org Our daughter, Kia, was born with Trisomy 13. She lived for 17 hours and we want to help anyone who gets a Trisomy 13 diagnosis.

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[tillitblo82]

I had a baby with trisomy 13 she lived almost 3 months. her name was kyara .. I miss her more and more everyday. she truly was a blessing. we had her home for the 3 months and it was very hard but now I see her as mommy's little angel.

[KiasMomma]

@tillitblo82 Awe, she is "mommy's little angel". I'm so very happy to hear that you were able to spend 3 months with her. I know it was hard but you were truly blessed! Hugs!

[pipitjay]

Thank you for posting this video- it helps to know that there are others who have gone through the same journey. I lost my precious little girl who is 6 days old on 15 May to what the doctors suspect is Trisomy 13 (tests results not out yet) as she showed the classic symptoms and Hydroplastic Left Heart Syndrome. For a small thing, she left a big gap in our hearts but we will always treasure the time we had with her.

[KiasMomma]

I'm so very sorry for your loss! Treasure all your moments with her. Hugs!

[KiasMomma]

Happy Birthday my little Butterfly Angel! Five years ago today I was waiting oh so patiently for you to come into this world so I could meet you and love you for all your life! Mommy misses you baby girl! xoxoxo

[simplyschooling]

We had a baby in Aug 2003 with Trisomy 13-- he lived 40 hours and was a wonderful blessing. We just learned the baby I am expecting also has Trisomy 13-- and again we'll leave it in God's hands how long with get with this little one. We also have 4 healthy children under the age of 7, so going through this again will be hard on them. Thanks for sharing your video. What a wonderful tribute to Kia.

[KiasMomma]

I'm so very sorry to hear of your loss! Obviously God has blessed you with another angel because he knows what a good Mommy you are! Thank you for telling me your story! I will keep you in my prayers!

[hdilay]

The doctors just told me today my baby boy has trisomy 13 and he will not live even if I wanted to continue the pregnancy. I had no idea there were survivors. Your video has touched me and gave me hope. The tears won't stop rolling down my cheeks.

[MidniteCatK]

my mom seemed very sick when she was pregnant with my brother and they just kept telling her nothing is wrong.

[MidniteCatK]

my little brother had it and he lived for about a day. I was about 9 at the time

[Maggie3039]

I have trisoy x witch means I have 3 x's and when my mom found out before I was born she could had termanided me but when she didn't that's when you know your parrents will love you forver!

[ThereseAnnM]

NIEW Trisomy Advocacy Group - Trisomy HELP

trisomyhelp (dot) org

SOFT Support Organization for Trisomy 18, 13 and Related Disorders

25 years Supporting Families

trisomy (dot) org

[ThereseAnnM]

Lori, Thank your again for this wonderful Trisomy Awareness Video up on the internet. The LWT13 site (2005-2010) has been Archived at trisomy13archive (dot) com The site CONTACT page points to current Trisomy Support.

[ShaylaMafia]

My daughter was pregnant with a baby with trisomy 13. At 14 weeks, everything looked normal. Then 15 weeks 4 days, the ultrasound showed no brain and extra digits. My daughter made the hard decision to go ahead with induced labor at 19 weeks 5 days. The morning of the induction, an ultrasound showed that the baby had already died. We got to hold Aiden for a while before the funeral home came to pick him up. It was a very emotional time. He weighed 7.5 ounces and was 6.5 inches long.