Perinatal Hospice is only part of the picture when an unborn child is not expected to live past birth. There are other issues to consider when a diagnosis is termed “lethal” or “incompatible with life.”
In a previous blog on September 22, 2021, I discussed using perinatal hospice to comfort parents of a stillborn or dying baby. https://www.patheos.com/blogs/musingsfromthepew/2021/09/blogs-musingsfromthepew-p272/
However, in cases where the unborn child has serious medical issues, there is more to be considered before death occurs, if it occurs.
Is a “Lethal” Condition Always Lethal?
First of all, parents need to know that sometimes the experts are wrong. There are numerous documented cases of children who were expected to die or be seriously disabled but who have turned out to be normal, healthy children.
It seems impossible these days with the advances in testing and ultrasounds that such errors could be made, but they still happen. Parents shouldn’t count on such a miracle, of course, but they should be willing to give the child a chance.
Parents of a preborn child with potentially serious medical issues are routinely offered an abortion. That would allow the obstetrician an easy out rather than handle a difficult pregnancy; or protect the obstetrician from a “wrongful life” or other lawsuit.
In other words, just “terminate” and start over, if you want, but save all of us this hassle.
Obstetricians don’t want to risk a lawsuit, so they paint a worst-case scenario. That way, if things turn out well, they can take the credit for being a miracle worker, but if there are serious complications, they are protected because they warned the parents.
Tracy Winsor of the Be Not Afraid organization (https://benotafraid.net/) sent me two relevant articles from peer-reviewed medical journals on the subject of prenatal diagnoses.
Both articles stated that the term “lethal” is loosely used. There is no standard definition of lethal malformations or specific list of such conditions. A review of cases shows that some “lethal” conditions are, in fact, survivable, at least for a time. The recommendation is that the medical providers should make a treatment plan, including palliative care.
At the very least, the obstetrician should consult a neonatal pediatrician to consider the possibilities of long-term survival if supportive interventions are provided. Some defects can be corrected with surgery.
The parents should be directed to appropriate counselling that will clearly explain the prognosis if treatment is provided.
Making a Plan for Care
There are two patients to consider, mother and child, so concentrating on the mother and writing off the child is not acceptable.
Recognizing that the at-risk child might be born alive, some obstetricians plan no farther than Do Not Resuscitate at birth, which denies the child any chance at life and the parents a chance to spend time with the child before death.
The journal articles also agreed that misusing the terms “lethal” and “incompatible with life” can lead to misunderstanding and miscommunication. The parents can be misled into thinking the child will definitely die when they might have a chance to take the baby home. Parents should ask, “Incompatible with life in whose opinion?”
Cases of parents battling with hospitals over treatment for a newborn make the news far too often. There are hospitals, particularly in Great Britain, refusing care that might give the child a chance at life. They even refuse to allow parents to transfer the baby to a hospital that is willing to provide care.
Quality of Life
Many medical providers make the judgment that any baby less than perfect will be a burden with no “quality of life.” As a result, they decide that the child will not be allowed to live and deceive the parents into compliance.
Catholics, however, should know that quality of life has more to do with love and spiritual health than physical or mental abilities.
Once again, I must emphasize that life and death are God’s decisions.
The Catholic Church teaches that every person should live from natural conception to natural death.
That means life should not be artificially prolonged by the clinging family of an elderly patient or by the frantic parents of a seriously ill child holding onto false hope. We must trust God to be merciful and wise.
However, it also means that euthanasia or assisted suicide is taking away from God’s time as does abortion or willful omission of medical services to children with disabilities.
Life is a gift from God, and it always has quality because we are made in His image and likeness. All life is sacred because it is inherited from the divine.