I subscribe to a number of invaluable online support groups which correspond via email and a recurrent discussion in these groups is how and when to speak about death with our children. I know I have told this to some of you but for many congenital heart defects, today's teen survivors are the first generation on the cusp of adulthood. Since techniques and technologies are constantly improving, we do not know the life expectancy of those who receive repairs today and the death of a hamster can open up a more difficult discussion in our families.
Here is my reply to a recent thread on this topic, replying to a mother whose 3 and a half year old with HLHS and unknown prognosis. Her preschooler asked when he would die and she wanted to avoid that conversation...
I would like to delay that conversation too and we have a bit of time since Wren is not yet t 2. However, Wren's risk of death due to his heart is very present in the mind of my 7 year old. I know it worries him but he looks to us for reassurance and help in interpreting the risk - not easy for us since Wren is facing surgery next month.
Just yesterday, I stopped the car at a crosswalk to let a very pregnant
woman cross in front of us. I said to Frost:
Me: Her baby will be born quite soon. She is very pregnant.
Frost: Maybe she is just fat.
Me: No, when you see a woman who has a very big belly like that but she is
very skinny everywhere else you can guess she is pregnant.
Me: Lets wish her baby a blessing for a good birth.
Frost: Mmm, lets send him wishes that he doesn't die.
Me: He's not going to die! Almost all babies are fine being born.
Frost: Well, lets send him blessings that he doesn't have a heart defect.
Me: [thinking fast] We can send him the wish to have a good doctor if he
has a heart problem.
Frost: Ok. He will be fine.
Uh oh. I notice that Frost is very matter-of-fact about death and its risks. When I was a young girl my grandmother died slowly of breast cancer. Nobody spoke about death or what was happening and I lived for years in fear that I secretly had breast cancer [and was a rare pediatric case - as a preteen I even looked it up in a medical dictionary] but in my tragic narrative nobody knew I was dying all the time.
I think that children can cope best with fears when they have the freedom to air their worries with us. Remember, they have no context or perspective by which to measure the relative risk of anything and we can help contain a fear - even a very real fear of death - and make it manageable because, ultimately, even death IS something children can face. I think children do well with facts but are always alert for the currents of anxiety which can cause them to disbelieve platitudes.
Another example from our lives is when I told Frost to remember to wash his hands so Wren didn't get a cold because if he gets flu or a bad cough now his November 7th surgery date may get bumped. Frost said "and then he will die?"
"No," I explained. "Then we will have to pay a lot more money to change our airfares and find another date for surgery and to manage without Granny because she will only be here from Australia for a month at most."
"Oh," said Frost "So if he gets a cold we will be poor?"
I realize I have to spell out repercussions very carefully to avoid placing the weight of the world on his shoulders.