Trisomy 13?!
Question: I was wondering if anyone has or had a child with ir. If you did could you please answer some of these questions?
Why is it commonly known as Patau Syndrome?
What is the life expectincy of a child with trisomy 13?
What would you reccomend to a expectant mother whose child has a genetic disease like Trisomy 13 (exTrisomy 18)
Answers: I was wondering if anyone has or had a child with ir. If you did could you please answer some of these questions?
Why is it commonly known as Patau Syndrome?
What is the life expectincy of a child with trisomy 13?
What would you reccomend to a expectant mother whose child has a genetic disease like Trisomy 13 (exTrisomy 18)
Dr.Klaus Patau first discovered the problem was genetic in nature.
Many children do not survive birth. Some may live for several months. There have been very very rare instances of survival beyond childhood (one documented case of which I am aware).
I would tell the mom to ask her physician to arrange for a perinatal palliative care team to assist with a birthing plan. They will provide the much needed support before, during, and after delivery. They are experts in this area.
These children usually do not survive past infancy, but many die within weeks after birth. I took care of a baby who lived 4 months. My advice to parents is to attempt to get your baby home so you can spend some private time with them before they pass. This is not always possible depending on the severity if their condition & may require surgery for a tracheostomy to help them maintain their airway to breathe & a feeding tube in their stomachs. This may be beyond what some parents would wan to go through. Another piece of advice is that if baby stops breathing several times in the hospital, they may want to tell the Dr. that they do not want extreme measures taken to keep them alive. Every time CPR is done on the baby, this uncomfortable, so quality of life will need to be looked at, at this point.
NICU RN