Parents sometimes receive the difficult news that their pregnancy is not going well because their child has a serious health problem and may die at birth or shortly thereafter. This news causes a large degree of suffering and the parents need all the support they can get from health professionals, from family and friends who love them and from people who have gone through the same suffering.

For example, trisomy 13 (Patau syndrome) and 18 (Edwards syndrome) are the most frequent abnormalities after Down syndrome. Children with trisomy 13 and 18 have a year survival rate of between 6% and 12% and, when they survive, it is usually with severe neurological disability. Some say abortion is preferable in these cases because they feel that continuing the pregnancy is worse than aborting the child before it is born. In fact, many parents seek an abortion in these circumstances, but, at the same time, health professionals often present abortion as "normative," as something that those parents "should choose" and as "the most sensible decision." Many parents who choose not to abort explain that they are subject to misunderstanding, negativity and little support when what they really deserve is personalized, individual attention, i.e., they deserve for the health professional to refer to their child by name and that they explain to the parents exactly which organs are affected, etc., rather than treating the child as "a product of unviable conception" that must be "discarded" by "inducing birth." 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 they die. Experience shows that these situations can bring out the best in these parents and their relatives and friends. When caring for their disabled son, biological parents love him as parents, intensely exercising their parenthood until the child's death. Many parents who have cared for children close to death claim that it was a difficult experience, but was also enriching for their lives and had a positive effect on their other children, as well as the rest of their family. They learned to love and not to expect anything in return; they learned that imperfection does not translate into inferiority, to not take for granted what they have, especially their own life, and they learned to celebrate each day as if it were their last. These short lives, in fact, lift humanity up, as well as society's capacity for love because of the positive impact they have on those who care for them until their end.

2) Caring for a child until the day of his death helps parents overcome the pain that losing their child entails: it is a part of the emotional recovery process (grieving), which is helpful in overcoming loss. Despite what it may cost to do so, they are able to better recover in this situation by caring for their child together until his or her natural death and they are left with the comforting fact that they loved until the end. Although this requires great effort, it carries a very human and humanizing result.

3) Many parents expect more from health professionals. They consider offensive the terms sometimes used by those who should be accompanying them during this difficult time. Terms like "nothing more can be done," "there is no hope," "lethal," "incompatible with life," "useless," "worthless," "vegetable," "this child will bring a lot of suffering (to their other children, in their work, to their life as a couple)," or "You can always have another child." Parents find it hurtful that some refer to their child in these terms or that they refer to their child by talking about the illness or problem instead of referring to the child with the name that the parents lovingly intend to give him.  Some doctors harshly state that "the parents have rejected abortion" rather than more positively asserting that "the parents have chosen to continue with the pregnancy and care for their child until his death."

These two statements are not the same. The first expression does not sound "respectful" or "tolerant." Parents need health professionals who understand them, who make them see that will do everything for their child's well-bing, so that the child does not feel pain and can live as comfortably as possible. Parents should be told that it is important that the child has parents who love him and that the health professional also hopes to meet the child at birth. While it is important not to generate false expectations, it is always possible to ensure the parents that they will do everything possible so that their child has the best life possible.

4) All life can seem short. When a child is born, we do not know how long he will live and any amount of time can seem too 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 expect to have a normal pregnancy and a strong and healthy child. But if the pregnancy turns out to have serious problems, their hopes may change; they can readjust their expectations to the reality of the moment and they may end up hoping to meet her son at birth, to as a minimum see him be born and to be able to at least take him home and care for even a few days, weeks or months.

5) Abortion involves the intentional and early death of that child. The abortion never brings parents back to "business as usual," as if the pregnancy had never existed. They have been parents of a child with disabilities whether he is born or not. An abortion impedes grief and prevents the natural pain of that loss, to which another is added.

When an unborn baby is diagnosed with a serious illness or deformity, the condition is often said to be "incompatible with life." However, experience shows that these children are not only compatible with life (certainly very short in some cases), but they are also compatible with the life and love of their families.

The following videos about people who have gone through this situation and they offer revealing testimony:

http://www.youtube.com/watch?v=iur_Lmb26AQ

http://www.youtube.com/watch?v=DtVyXXUh_uo

The following is a website with testimonies from parents with children diagnosed with a terminal condition:

http://www.everylifecounts.ie/Jokin de Irala (www.educarhoy.org; www.joveneshoy.org)