Knowing our little one may have a much shorter or potentially longer life than expected also leads our family to discussing and coping with our child’s eventual death. There is no easy way out of this painful experience of mourning the expectations gained with pregnancy and lost upon learning this diagnosis. Termination is against our Christian faith and I do not consider any form of abortion therapeutic. Others who have had these procedures to their physical body have had no therapeutic procedure to aid in the emotional or spiritual consequences.
While an attempt to allow the baby to die before its life is viable outside of the womb may end the visible outcome of the pregnancy, the pain of it all remains with the parents and family and portions of this grief journey continue to manifest both physiologically and psychological to all family members, not just mom and dad. So then, does abortion really end the visible outcome, or merely mask the inner continuation?
Christians are seeking to live our faith by accepting natural life (life from conception to natural death) which is healthier for us to cope with and maintain obedience to our spiritual beliefs and moral conscience; although, none the easier to deal with. All families who suffer the loss of a loved one are encouraged to seek support for their feelings of bereavement.
Doctors, as you deal with parents of a child diagnosed with a severe chromosomal abnormality, realize that the parents of these children are forced to prepare for all aspects, which may include an early death, funeral arrangements as well as a longer life, quite possibly with a severely disabled child. Our Christian faith believes that miracles happen and when you take away our hope of being able to care for this sacred life in the manner in which God has presented it to us, you kill our faith, not our worldly dreams and certainly not our sorrows. As parents, we are obliged to think through all circumstances and prepare for each situation as they may occur in our child's health.
I reiterate, taking this plan of life for our Trisomy 13 child’s health is just as difficult to bear at times as other (lawful) alternatives; but as Christians, it is the only path that is morally correct. Ask parents “what if” questions to help them think through scenarios. Support a plan of care that can be carried into a program to set goals if this child is a survivor and above all, listen to the parents to understand their directives for their child in light of this diagnosis.
We, parents, need our child’s physicians, to be supportive of our syndrome child as well as compassionate of our underlying spiritual beliefs. As all humans who carry emotions, guilt and sorrow for loss, we DO sometimes second guess our actions, which is why it is critical that as parents we surround ourselves with those who can be supportive of our Christian faith values and help us along the medical side of this journey. If you are a physician called to practice these beliefs, feel free to reference your office as a Trisomy Friendly or Rare Medical Diagnosis (RMD) Friendly physician’s office. Links to your business, website or services will be added to our website upon request.
Peace and Blessings to you for your support,
l
Yesterday we ran a story by Alex Schadenberg which reinforced something we know to be true but is not widely understood: That most parents of children with Trisomy 13 or Trisomy18 conditions (in this case Canadian parents) consider their child to be happy and found that their lives were enriched by the child. He drew that conclusion based on the results of a study published in the current edition of the Journal “Pediatrics.”
