SCID Compass video guides parents through family planning

After a baby is born with severe combined immunodeficiency (SCID), parents may be unsure how to proceed with family planning. They may have questions, such as: Will our other children have SCID? Is having more children the right decision for us? Who can we turn to for guidance on these topics?

A video created for IDF’s SCID Compass program by partner Expecting Health, an iniative of Genetic Alliance, walks parents through the steps to take as they consider whether and how to further build their family. The five-minute video is animated and follows the Fisher family as they embark on the decision-making process. The video is the seventh and last in a series created by Expecting Health, with preceding videos covering SCID diagnosis, treatment, hospital stay, post-treatment, returning home, and planning for the future.

According to the video, an important part of the family planning process should be consulting with a genetic counselor because SCID is a genetic condition and, in most cases, is inherited from the mother, the father, or both parents.

A genetic counselor can educate families on how the type of SCID their child has is inherited, how it can affect their family, and what family planning options they have, including natural conception, in vitro fertilization, and adoption.

“Navigating the family planning process can be overwhelming, especially after having a child with a genetic disorder,” according to the video. “Genetic counselors are a great resource for families on this journey.”

Questions families may expect during an appointment with the genetic counselor include:

• What are your wants and needs for your family?
• What type of SCID does your child have?
• Are you a genetic carrier for SCID?

The SCID Family Planning Guide is also featured in the video as a resource for parents to help them make decisions about growing their family. The one-page resource advises parents to:

• Understand the type of SCID diagnosed in your child
• Know if either or both parents are carriers of SCID
• Explore all family planning possibilities, including:
  • Not expanding your family
  • Choosing to have additional birth children through natural conception or in vitro fertilization
  • Building your family through adoption

The SCID Compass Family Planning Guide also provides a worksheet that prompts parents to discuss answers to questions like:

• What are your family’s greatest strengths?
• What are your family’s top health priorities?
• What do you envision your family to look like in five years?

“Deciding what the next step is for your family, whether or not to have additional children and how, is an intimate and personal decision. Ultimately, no matter what you decide, it’s the best choice for you and your family,” concludes the video.