Trisomy 13 Syndrome (Patau Syndrome)
Trisomy 13 syndrome also knows as Patau Syndrome is a chromosomal abnormality due to the gaining of extra copy of chromosome 13. The median age in this abnormality is only 2.5 days…
| Comments on article "Trisomy 13 Syndrome (Patau Syndrome)" |
| Name |
Views and Comments | Date |
| 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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