A Pediatrics study of 322 parents who chose not to terminate children with trisomy 13 and 18 finds that while most were initially told their child was 'incompatible with life' and would suffer, 97 per cent later described their child as happy, despite severe disabilities, and enriching their families, even when their lives were short.
A good summary appears in this piece in Science Daily:
Children with trisomy 13 or 18, who are for the most part severely disabled and have a very short life expectancy, and their families lead a life that is happy and rewarding overall, contrary to the usually gloomy predictions made by the medical community at the time of diagnosis, according to a study of parents who are members of support groups published July 23 in Pediatrics.
And here on Medline Plus.
The study was co-authored by two neonatologists and parent Barb Farlow (in photo with daughter Annie, who had trisomy 13, above).
A blog by Montreal neonatologist Dr. Keith Barrington comments on the study and offers these suggestions to health professionals working with families:
1. Don’t say that this is ‘incompatible with life’ or ‘lethal;' anyone can go on the internet and find very quickly that you lied to them.
2. Don’t say that if they survive ‘they will live a life of suffering.' Parents do think that their child had more pain than others, but they also had many positive times, and their overall evaluation was positive.
3. Human beings are not vegetables. These children are conscious and interact, even if at very limited levels. Carrots don’t.
4. Don’t predict marital disharmony, or family breakdown. You can’t see the future, there is no evidence at all that this occurs more when a family has a baby with severe impairments, and indeed in this admittedly biased sample the divorce rate was far lower than the US or Canadian average.
4. Families find meaning in the lives of their children. Whether those lives are unimpaired or lived with severe impairments. Whether they are very short or not.
5. Don’t suggest that the child is replaceable. Sometimes parents will bring up the idea that they can have another child, that is fine if they do so, but for you to suggest it really shows that you think this child is worthless.
6. Don’t say that there is nothing you can do for them. There is a lot you can do. Empathy and a positive attitude can be a great help. Finding resources, respite care, enabling appropriate medical care, these are all things that you can do for them.
7. Be very explicit about medical decision making, come to an agreement about the limits of medical interventions (if you can’t, then find them another doctor who can); and be open to changing the plan as time goes on.
8. Refer to the child by name if there is a name. (Annie has often recounted to me that when she sees parents antenatally with a serious diagnosis she will ask them what the baby’s name is. They often become teary and tell her it is the first time anyone has recognized their fetus as being a real potential human being...)
9. Above all recognize that these babies are human beings who will be loved, who will be cared for, who will leave a positive mark on their families, and who deserve respect.