Patau Syndrome (Trisomy 13)
Mission Statement: Offering Support Resources and bringing together families who have a child with an extra Chromosome 13.
Whether they are:
on the prenatal journey...
have a child living presently...
those who’ve had a stillbirth, a child who
lived briefly or many days, and those further along on their
This amazing community of families, through their
own grief and pain, reach out to help others on this very unique
journey with Trisomy 13. All these families have lived and are
living with a Trisomy 13 diagnosis and the reality of how it changes
lives. With Courage, Grace, and Hope they continue on. Experiencing
the transformation of grief into “Thanksgiving JOY.”
We believe each new life is a precious miracle and encourage growing in
love to embrace life from conception to natural death.
This site focuses on bringing together the families of children diagnosed with
having a third (extra) number
Chromosome 13. Trisomy 13 children have multiple
abnormalities. Some include heart defects, brain defects, cleft lip, cleft
palate. The most severe are visual abnormalities, omphalocele, proboscis and
holoprosencephaly. Because of the many abnormalities, we believe all of these
children are survivors if they reach their mothers arms. They are true miracles
This web site shares
stories of children who have
Trisomy Mosaic (Trisomy
Full Trisomy 13,
as well as other
Many only survive outside their mothers womb a few short minutes, hours or days. While others can go home and survive months
or years. Sadly, many of the children with
Trisomy13 (Patau Syndrome) do not reach their first birthday.
Each of these families
were eagerly awaiting the arrival of a much wanted baby. All of them
loving and making dreams for their future, when either told
prenatally or at birth, that their child had an “incompatible with
life” diagnosis. They’ve all had to make the heartbreaking choices
that no parents dream they will ever need to make. The choice to:
Terminate the pregnancy (Abortion), continue with the pregnancy
(Choosing to carry to term), hospice care, pallative care or push
for early medical intervention and on-going medical treatment.
For the families here the choice was clear: with Courage, Faith, Hope and Love they would embrace what was
ahead of them. Many found this site and knew they could also create beautiful moments with their precious child, creating their own unique journey – living and growing in love...
Patau's Syndrome can be overwhelming for most parents in the early stages of this diagnosis.
Medical Professionals who are not current with the ever changing and fast paced world of the
Internet are still telling families that there is no hope, when you can see within these pages
that there is always hope, if even for brief moments.
Those moments are cherished by each and every family who has embraced their child with this poor prenatal diagnosis. Becoming your child's best advocate, parents, family, and friends can find HOPE as they search for support and meet survivors. With the many
living children stories, photos, slideshows,
and videos, you can see these children who do survive are happy.
The first year can typically be rough
but there are many trisomy support groups, resources and informational links to
provide help. This site shows you the reality of a trisomy 13 diagnosis. With the many support resources provided here, you can make well-informed choices for the future medical treatment of your child as you move forward
on your own trisomy13 journey.
Also by remembering our
Treasured Trisomy 13 children we provide a place where the living memories and special moments are seen in photos and can be shared with others. As you can see, each child is a Unique Precious Child, worthy of receiving and giving love, inspiring all those they meet.
~~ThereseAnn (Natalia's mom and site facilitator)
All text and graphics ©
LivingWithTrisomy13.org 2005-2010 - all rights reserved
Use prohibited without permission
All information found on this site was submitted to
us directly by the families
and used on this site with their permission.
Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela
Sullivan 2004, used with permission.
|If We Hold On Together Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.
Used with permission.
All material on this site reflects our personal journey with raising a Trisomy
13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional
familiar with your specific condition. The personal journeys of any parents on
this site are only their opinions and their own journey with having a Trisomy 13
child. You should consult with your own physician or other medical professional
regarding the opinions or recommendations expressed within these pages as to
your own child's symptoms and medical condition.
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