Quite a few books deal with the decision to carry a child to term that has a genetic defect, such as trisomy 21 (Down Syndrome) or in which parents are told that their child has a genetic disease that will severely impact its ability to live what is considered a "full and productive life." The decision is a deeply personal one and should be made by each parent given the specific circumstances of their situation. So I will not go into what I think should be done or what society may think should be done and where society or individual parents err in their ways.
What sets this book apart for me is the fact that Rick and Karen Santorum carry their little girl to term, only to find out that the newborn suffers from Trisomy 18. Trisomy 18 is much less common than Down Syndrome, but much more severe since most of the affected children die before birth.
Similar to Down Syndrome, Edwards Syndrome is also increased as the mother's age increases and the syndrome causes most of the affected babies to die soon after birth due to wide range of severe associated effects, which include heart
abnormalities, kidney malformations, and other internal organ disorders.
While Rick and Karen are not your average parent, even for these parents the news was devastating. They were certainly in a position to provide the best care for their daughter, but the daily life with Bella has many challenges for them as well. A lot of readers may only point to the fact that the Santorums due to their good financial situation are not your average parents and that is certainly the case. But what these readers may forget is that having a child with Trisomy 18 poses many other challenges to parents; there may be some initial guilt, question of why and then how to handle the daily routine that may pay attention to all children.
I found this book to well written and useful as a guide to parents that may face similar situations as the Santorums did. The book does not attempt to sugarcoat what life with Bella is like, but you can tell from the writing that these parent do not regret having Bella as part of their lives.
Disclaimer: I received a free copy of the book in exchange for an honest review. The opinion expressed in this blog is solely my own and has not been influenced by any third parties.