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When Birth Defects Are So Severe That Your Child May Die Young

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.