Trisomy 13 - Patau syndrome
What is Trisomy 13?
Trisomy 13, also called Patau syndrome is a chromosomal disorder where there are three copies of chromosome 13 and can cause severe neurological
and heart defects; approximately 80% of children born with this defect die shortly after birth.
Infants born with trisomy 13 often have several of the following conditions: heart defects, kidney defects, neurological problems, microcephaly
(small head), holoprosencephaly (failure of the brain to divide into halves during development), severe mental deficiency, polydactylism (extra
fingers or toes), deformed feet (rocker-bottom feet), microphthalmia (small eyes), malformed nose, and cleft lip and/or cleft palate. Due to the
existence of many of these life-threatening medical defects many infants with trisomy 13 die within their first days or weeks of life.
For more information on this disorder please visit:
Genetic Home Referrence U.S. National Library of Medicine
iHealth Healthcare Information Directory
MedlinePlus A service of the U.S. National Library of Medicine from the National Institutes of Health
Mothers tell their stories...
I told her how sorry I was and that I loved her and did not want her to suffer. I would rather suffer every day for the rest
of my life than to allow her to suffer one moment in life.
~Mom of an Angel
Everything was going great. As already having two "normal" pregnancies under my belt, I felt confident. I knew there
was always that chance of hearing bad news but I said "no, not me, not our baby."
We felt that if our daughter had been in a car accident and was on life support with the same internal injuries, we would
not keep her on life support and let her suffer. This child deserved the same dignity."
~ A grieving mom
I initially thought I would "be brave" and continue my pregnancy. But I came to realize that ultimately it wasn't about
how strong I could be, how deeply I wanted this baby or what important lessons he could teach me. It was about what
he would experience in his short life. Given his diagnosis, he would have known only suffering. As his mother, I
couldn't allow that to happen.
~ A mother at peace
It was our ignorance for believing that all pregnancies led to a healthy baby. It was my arrogance for believing that since
I had the best medical care, took prenatal vitamins even before and during my pregnancy, never took drugs, never smoked
cigarettes and drank about half a glass of wine a year, that our baby would be safe.
~A bereaved mother
A mother will stop at nothing, including her own hurt, both mentally and physically, to protect her child.