Trisomy 13 Syndrome (Patau Syndrome)

Comments on article "Trisomy 13 Syndrome (Patau Syndrome)"
Name Views and CommentsDate
Heather 07 Hi Heather 09 Its Heather 07 5/5/2011
trish this stuff is so intresting to me...I LOVE SCIENCE! 5/5/2011
Joe F Cool Joe S... 5/5/2011
joe S intresting! ! ! ! ! 5/5/2011
Imelda Castro I have a baby boy with trisomy 13 and he to had a gtube insurted at 2weeks old. When they took xrays to place gtube, they then found out he had his intestines malrotated. They fixed them and place gtube and he did well. He is a wonderful little being, he laughs and makes everyones day that is around him. He is a blessing sent from god and everyone that sees him can't believe he has this disorder. 1/31/2011
maddie barker thank you! this was very educational and helpful to me for my school project. i liiiiike this website :) 4/4/2010
Rena,Proud mom I believe those who have written this have never loved a Trisomy 13 child. These children are a gift from God and you cannot generalize them. There are many alive and doing well. You give no parent hope. There is hope. The Drs are not God and should not be making some or forceing some of the sugestions they have for these babies. If I knew now what I knew when I had my baby thing would have been done so differant. 10/9/2009
ThereseAnn Sadly your general impression of withholding surgical treaments would end the life of a trisomy 13 child. Some of these kids can do rather well with some intervention. My child had a g-tube insertion and malrotaion repair at 6 weeks. It saved her life and she is a delightful child living with trisomy 13 and now 9 yrs. She is a special needs child, that is ok, she is really a very special child and a wonderful member of our family. Full of themost amazing love and spirit of JOY.
Your comment... Physician's have to carefully judge about extraordinary life-prolonging measures should also include the parents in this decision.
I'm very sad to see so much of the new internet sites promoting no hope. there is much hope for some of these kids. and many parents who would love to care for them.
ThereseAnn, mom to Natalia
Come visit over 90+ Survivors Living with trisomy 13. You can view the site by going to livingwithtrisomy13 ( dot ) org
Come view over 250 amazing kids and stories... Families Embracing Life one moment at a time.		 10/8/2009
ThereseAnn Treatment

Medical management of children with Trisomy 13 is planned on a case-by-case basis and depends on the individual circumstances of the patient.

My child needed a feeding tube at 6 weeks, if this surgery was not done she would have died. She is a wonderful loving member of our family. Trisomy 13 Patau Syndrome is not always futile to treat. We really need to adjust the continued misinformation that is spread in the literature.
To view many families who have loved and cared for these most precious of children.
Go to Google and search
"Living with trisomy 13" There are over 95 living children and many resources for families.		 8/28/2009
ThereseAnn Treatment

Medical management of children with Trisomy 13 is planned on a case-by-case basis and depends on the individual circumstances of the patient.

My child needed a feeding tube at 6 weeks, if this surgery was not done she would have died. She is a wonderful loving member of our family. Trisomy 13 Patau Syndrome is not always futile to treat. We really need to adjust the continued misinformation that is spread in the literature.
To view many families who have loved and cared for these most precious of children.
Living with trisomy 13
www (dot) livingwithtrisomy13 (dot) org		 8/28/2009
Kriss Trisomy 13, that is. 4/29/2009
Kriss. My baby cousin had trisomy and lived for four hours. It's a very serious condition that comes with very serious descions regarding the life of your child. 4/29/2009
Heather 09 I think that this is a very serious disease, and anyone living with this or past experiences of this should be remembered, and the picture looks like a teddy bear, how could it look like a teddy bear and be so nasty? 4/21/2009
ThereseAnn Many children, teens and some adults, Living with Trisomy 13 Patau Syndrome 11/3/2007
azen kid the picture looks like a teddy bear, it doesn't look like a good picture 3/7/2007
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