Don't be afraid to ask questions

Don’t be afraid to ask questions of your child’s doctors. Some questions that you could ask include the following.

  • What makes you think that life support treatment will not work for my child?
  • Is there a chance that medical treatment could work? If so, how big or small is that chance?
  • Is there anything else that could happen? How likely or unlikely is it that this could happen instead?
  • Is there any way of being sure about the outcome for my child? What are the risks and benefits of life support treatment for my child?
  • If my child survives, what would everyday life be like?
  • Is there any scientific evidence on quality of life in this condition?
  • Is there any support group for the problems that my child is facing?
  • I need to understand what life would be life for my child and my family?
  • Is there anyone I could talk to?

“How does one deal when you are told your baby will pass away and may not even make it to birth, let alone full term? I could not find the words even to ask any more questions. The doctors told me to start planning for comfort care because there would be no way to intubate her to help her breathe. I was beyond devastated, but the fire in me never burned out.

I finally decided to stick with comfort care, so I could enjoy every moment with Elin close by my side.”

Baby Elin’s Mom

ACKNOWLEDGEMENT
Much of the content for this booklet was provided by the following.
The Royal Children’s Hospital
50 Flemington Road
Parkville 3052 Victoria Australia
AUTHORS
Dominic Wilkinson, Lynn Gillam, Jenny Hynson, Jane Sullivan, Vicki Xafis