Dear Health Professional,

Welcome to the SOFT (Support Organization for Trisomy 18, 13, and Related Disorders) page for health professionals.  SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in trisomy 18, 13, and related disorders.  Support is provided during prenatal diagnosis, the child's life and after the child's passing.  SOFT is committed to respect a family's personal decision-making and to the notion of parent-professional relationships.

We have been closely involved with SOFT for many years.  John is the medical advisor to SOFT and cofounder with parent Kris Holladay.  John is a pediatric geneticist and has a vast amount of experience dealing with infants and children with trisomy 18, trisomy 13 and related rarer disorders.  His medical interest and expertise in this area are complemented by a strong desire to support families as they deal with the complex issues surrounding these syndromes.  Scott, a general pediatrician, has learned firsthand about these issues after having a son with trisomy 18 who lived for 2½ months.  SOFT has been an invaluable resource in educating and supporting his family through the whole process of coping with a child with a serious illness and dealing with his death.

Health professionals can play a very important role in helping and guiding families who face a pregnancy or an infant with trisomy 18 and 13.  As mentioned in the Trisomy in Review Research Newsletter found on the next page, experiences with families reveal several themes:

1. It is important to recall that about 5-10% of children with these syndromes do survive the first year of life, thus, the condition is not universally lethal as sometimes presented by health professionals. 
2. While the developmental disability in children with trisomy 18 and 13 is significant, it is important to recognize that children do advance to some degree in their milestones.  They can interact with their families, smile and acquire some skills, such as rolling over, self-feeding, etc. if they survive infancy.
3. Families in these situations appreciate the opportunity to participate in decisions involving the care of their children.  If you have any families dealing with the issues discussed, please keep SOFT in mind. 

A package of information given to SOFT families can be sent to you by calling National SOFT headquarters at 1-800-716-7638 or writing SOFT c/o Barb VanHerreweghe, 2982 So. Union St., Rochester, NY, 14624 (E-mail address: barbsoft@rochester.rr.com )

Please refer to other publications, which can be ordered and are listed on a previous page on this web site.  A valuable guide for families and professionals is Care of the Infant and Child with Trisomy 18 or 13 by Ann M. Barnes, RN and John C. Carey, M.D., M.P.H.  Thank you for visiting us.

Sincerely,

D. Scott Showalter, M.D., M.P.H.
John C. Carey, M.D., M.P.H.