There is nothing more heartbreaking than a parent burying her or his
child. It goes against every grain of your being, and the cosmic order
was designed for children to bury their aged parents – not before
presenting them with a gaggle of grandchildren, of course! Yet in some
cases this scenario will never play out and you are the recipient of a
heart breaking diagnosis when birth defects are so severe that your
child may die young, you have to deal with the worst possible
emotions.

Unfortunately, there is not easy way through it. There is not book you
can read that will make it all better, nor is there a group you can
join that will somehow get your through it and keep you on an even
keel all the way through. In a situation where the death of a child
because of a birth defect is a distinct possibility, you can only rely
on two things: your faith, if you have one, and your inner strength.
Help is available from a number of sources, but at the end of the day,
in the dark of night, it is only you who is awake at two in the
morning.

Where the possible death of a newborn is heartbreaking, the possible
death of a young child is a gut wrenching experience for which there
is no good way to prepare. Yet for your child’s sake, you must learn
to work through your grief and help your child deal with her or his
fear and also grief. If your child is undergoing medical treatment and
away from the comforts of home, she or he is most likely scared and
any and every distraction you can bring is welcomed. To this end,
enlist the help of friends and family to sit with your child, read,
play games, watch videos together, and also take meals and do homework
in the child’s room.

Ask open ended questions and hear the clues that indicate your child’s
need to ask questions and to receive reassurances. Whether your child
is in danger of dying, or will need to cope with the reality that her
or his health is temporarily being stabilized but that a relapse may
threaten at any time, the question of death will most likely come up
at some point. Depending on your religious convictions, this is a good
time to share the hope of a future life you have: a life free from
sickness and hospitals, where you will all be able to play together.
Do not refer to death as a long sleep but instead refer to it as a
kind of metamorphosis where the child will live on and will once again
meet up with you.

In this setting, explain to the child that she or he will never be
alone but that there are friends and family members already there who
are waiting to take care of the child until you get there. Bring
pictures of deceased relatives or friends your child may have never
known but may be able to learn to love nonetheless. While it may
appear ghoulish to the onlooker, there is no wrong way to prepare a
young child for the possibility of dying to such an extent that the
actual act no longer poses any fear and anxiety to the little one. The
goal is to keep your child free from fear and anxiety, and every
theologian will agree with you that the religious fine points of what
happens after you die according to whatever set of holy texts you
believe in matter little in the face of a child’s terror.