The International Trisomy Alliance has just released a free online booklet, Preparing for Your Baby’s Arrival, for parents who have received a diagnosis of Trisomy 13 or 18.
The booklet gives readers a broad overview of trisomy 13 and trisomy 18, pregnancy, possible loss, planning and caring for a baby. Prospective parents are often overwhelmed by negative information and grim statistics about the lifespan and quality of life of a baby with trisomy 13 or 16. This booklet encourages parents to acknowledge that their baby is more than a statistic or a genetic label and a baby’s journey can never be be predicted with certainty.
In the introduction, the authors declare that each child deserves to be cared for as the unique individual they are. Their advice to parents: “If you have just received a diagnosis of trisomy 13 or trisomy 18 for your unborn or newborn infant, you are probably in a state of shock. You may feel anger and anguish together with moments of hope. These are natural emotions.”
TRISOMY 13 and TRISOMY 18: Preparing for your baby’s arrival includes the most recent published research. The authors sincerely hope that this and other information provided by the International Trisomy 13 and 18 Alliance (ITA) will support parents in making informed decisions.
Authors include Siri Fuglem Berg MD, a physician in Norway who provides peer support at Care in the Womb.