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Jokin de Irala Estévez, Full Professor of Preventive Medicine and Public Health. researcher main of the project 'Education of the affectivity and human sexuality ' of the Institute for Culture and Society

Compatible with life, compatible with love

Wed, 11 Mar 2015 12:38:00 +0000 Posted in Good News (March 2015)

Sometimes parents receive the news that the pregnancy is not going well because their child has a serious health problem and may die at birth or shortly thereafter. This news causes them great suffering and they need all the support they can get from staff health care, family members, friends who love them and people who have experienced the same thing.

For example, trisomies 13 (Patau's syndrome) and 18 (Edwards' syndrome) are the most frequent anomalies after Down syndrome. Children with trisomies 13 and 18 have a one-year survival rate between 6% and 12% and when they survive they have severe neurological disability. Some say they are in favor of abortion in these cases because they feel that continuing the pregnancy is worse than aborting the child before it is born. In fact, many parents request abortion in these circumstances. But health professionals often present abortion as something "normative", as something that these parents "should choose", as "the most sensible decision" and many parents who decide not to have an abortion report suffering incomprehension, negativity and little support when they deserve individualized, personalized attention, i.e. that their child is referred to by name and that they are told exactly which organs are affected, etc. instead of being treated as "an unviable product of conception" and to be "discarded" by "provoking childbirth". The language used is important because "all lethal language" leads to "lethal decisions".

1) A baby born with a severe disability can be loved and cared for by his or her parents until death. Experience sample that these serious situations can bring out the best in these parents and their family and friends. By caring for their child with a disability, these parents are loving the child as parents, in fact intensely exercising their parenthood until the child dies. Many parents who have cared for children who were in danger of death say that it has been a difficult experience but also that it has been enriching for their lives and that it has had a positive effect on the other children and the rest of the family. They have learned to love and not to expect anything in return, they have learned that imperfection does not mean being inferior, they have learned not to take for granted everything they have, such as their own life, and they have learned to celebrate each day as if it were the last they were going to live. These short lives actually enhance society's humanity and capacity for love by the positive impact they have on those who care for them until they pass away.

2) Caring for a child until the day of his or her death financial aid helps parents to overcome the pain of their loss: it is part of the emotional recovery process (grieving process) which is a great financial aid to overcome a loss. Although it may be difficult to do so, they will recover better from this status by caring for the child together until his or her natural death and taking comfort in the fact that they loved him or her until the end. Although it requires effort, it is a very humane and humanizing solution.

3) Many parents expect more from staff health. They find offensive the terms sometimes used by those who should be accompanying them in these difficult moments. Terms such as "there is nothing we can do", "there is no hope", "lethal", "incompatible with life", "useless", "worthless", "vegetable", "this child will bring you much suffering (to your other children, in your work, in your life as a couple)", "you can have another child". Parents find it hurtful when their child is referred to in these terms or when the name of the disease or problem is used to refer to them instead of the name they lovingly want to give it. Some physicians state harshly that "the parents have refused the abortion" instead of stating more positively that "the parents have chosen to continue the pregnancy and care for their child until he or she dies".

One statement is not the same as the other. The first expression sounds neither "respectful" nor "tolerant". Parents need a staff health care provider who understands them, who makes them see that he will do everything possible for their child's well-being, so that he does not feel pain and can be as comfortable as possible. Parents can be told that the important thing is that the child has parents who love him/her and that they also hope to be able to meet him/her at birth. Although it is important not to give false expectations, it is always possible to assure the parents that everything possible will be done to give their child the best possible life.

4) All life can seem short. When a child is born, we do not know how long it will live. And any duration will be short for those who love him. The value of a life is not determined by its duration. Hope is important for parents. When parents decide to have a child, they hope for a normal pregnancy and a strong, healthy child. But if it is a pregnancy with serious problems, their hopes may change; they readjust their hopes to the reality of the moment, and they may end up hoping to meet their living child, to at least see it born, to at least be able to take it home and care for it even for a few days, a few weeks or a few months.

5) Abortion implies the intentional and anticipated death of that child. Abortion never makes it "business as usual" for those parents, as if that pregnancy had never existed. They will have been the parents of a disabled baby, whether born or not. Abortion will impede mourning and the natural grief of that loss will be compounded by another.

When an unborn baby is diagnosed with a serious illness or malformation, it is often said that it is "incompatible with life".sample However, experience shows that these children are not only compatible with life (admittedly very brief in some cases) but are compatible with life and the love of their families.

The following videos about people who have been through this status give revealing testimony:

Web about testimonies of parents with children diagnosed with a terminal condition: of Irala (;