Evy Kristine (the little girl that Siri Berg, her mother, wrote about) has a website, with a page in English. The title of this post is taken from one of the two very moving poems you can find there written by her elder brother. You can also find a link to a youtube video that the family made, and to other resources.
One of those resources recounts a much more positive interaction with the medical system, showing that we can sometimes get it right. Daniel’s book recounts a prenatal diagnosis of trisomy 13, and multiple interactions with helpful compassionate people who were willing to listen to the family’s wishes, to offer a range of possible approaches, and to support them in the decisions that they made. Daniel lived just 32 hours.
It sounds as if many of them had read John Carey’s article from last year, or maybe (as that isn’t possible) they were just caring people. Dr Carey’s article ‘‘Carey JC: Perspectives on the care and management of infants with trisomy 18 and trisomy 13: Striving for balance. Current Opinion in Pediatrics 2012, 24(6):672-678” is a review of the literature, and ends with recommendations, which I quote in a shortened form from the abstract:
The author recommends a balanced approach to counseling families of the newborn with trisomy 18 and 13 at the time of diagnosis. The counseling process should include presentation of accurate survival figures, avoidance of language that assumes outcome, communication of developmental outcome that does not presuppose perception of quality of life, and respect for the family’s choice, whether it be comfort care or intervention.