Not Compatible with Life,
a diary of keeping Daniel

By Kylie Sheffield

Kylie (mom to Daniel) would love to share her book with you.  Please email her for more information. shefs@aapt.net.au

Book Launch – Not Compatible with Life: a diary of keeping Daniel

• The first time I heard the term ‘trisomy 13’ was in March last year when I went for a routine second trimester ultrasound and was told that my baby most likely had a chromosomal disorder considered to be ‘not compatible with life’. By the time amniocentesis returned a full diagnosis, I was almost twenty-two weeks pregnant, giving Paul and I a little over a week to decide whether to end or continue my pregnancy.  
   
• Those first weeks following detection and diagnosis were the most confusing and traumatic of my life, largely because there was no information on trisomy 13 readily available to us. There were no pamphlets, books, information packs, or doctors who specialised in the condition. Since we were not going to end our baby’s life based solely on what little we knew; or just because that was the usual course of action, we decided to do some research of our own, and learn as much as we could about the likely symptoms and outcomes for babies like the one I was carrying.  
   
• What we found was this:
  • Many trisomy 13 babies not only make it to term, but live for days, weeks, months and even years.
  • Of those parents who continue their pregnancy—even those whose babies are stillborn or live just a few minutes—the vast majority are deeply grateful for the chance to hold and care for their child, however briefly.  
  • Many of these parents have been encouraged and, in some cases, pressured to terminate by doctors and specialists who base their advice on outdated and inaccurate information about survivability and quality of life.
  • Some women who choose to end their pregnancy following a trisomy 13 diagnosis are offered no counselling or grief support prior to or after the procedure, and many of them later regret their decision.  
     
• We decided to keep and love our baby for as long as we could. I had a beautiful, healthy pregnancy and Daniel was born at home, ten minutes before 7pm on 7/7/07. He was with us for 32 hours before dying peacefully in my arms.  
   
• Thankfully, I was supported by sympathetic and caring medical professionals throughout my pregnancy, with my homebirth midwives in particular, providing incredible emotional support. But many mothers in my situation haven’t been so lucky.  
   
• There are doctors who believe termination is the only acceptable course of action when a prenatal diagnosis reveals a condition like trisomy 13, arguing that it’s to the parents’ advantage to prevent the birth of a baby who will die immediately or face a life of severe disability. I would suggest that these doctors fail to consider the emotional impact of terminating a pregnancy, especially one that has progressed well into the second trimester. They also fail to acknowledge the fact that some trisomy 13 babies, albeit a very small number, do survive and thrive.
   
• I’m not trying to sugar-coat the realities of living with this condition—many survivors require multiple surgeries, continuous medication, and ongoing specialised care from their families and medical teams. But their lives are far from the vegetative state doctors once predicted as the only possible outcome.
• In writing this book, it was never my intention to criticise the decisions of any parent who has received a difficult prenatal diagnosis. But parents in this situation have a right to good information and accessible emotional support. To decide to end a pregnancy with all the facts and a strong support network behind you is one thing, but to make this sort of decision because you didn’t know there was any other choice is something else entirely. Most importantly, it needs to be acknowledged that regardless of the circumstances, parents who make this choice have lost their babies too, and that their grief is real and often long-lasting.
   

·     This book is a celebration of the life of our son Daniel, who lived for just 32 hours, but changed our lives profoundly and irreversibly.  I published it not because I want every parent who receives a difficult prenatal diagnosis to make the same choices we made, but because I want every parent who receives a difficult prenatal diagnosis to know that they have choices.