Making decisions about medical interventions and surgeries either with or on behalf of your child is one of the most important aspects of this job as parent. It can also be the most difficult. Parenting a child with serious illness and medical complexity involves many difficult decisions. For some children and conditions, this includes the decision whether to have spinal fusion surgery for neuromuscular scoliosis.
We need your help. Courageous Parents Network is proud to be working with Boston Children’s Hospital’s Complex Care Clinic in their development of tools and processes to help families and pediatric patients evaluate whether spinal surgery is right for them, and to improve outcomes for the child and family.* One of the tools is a Decision Making Guide for Spinal Fusion in Children with Neuromuscular Scoliosis. A first draft of the Guide is ready for parent feedback. You are the experts. Will you help us and other families by providing feedback to the Guide?
In addition to being used at Boston Children’s, the final guide will be available on Courageous Parents Network for families everywhere to access and use wherever they are being cared for.
If you are willing to provide feedback, please email Kerri at firstname.lastname@example.org and we will email you a copy of the Guide, along with questions and places for your comments and suggested edits. If you would like to see any subsequent drafts, please let her know that in your message.
* This work is part of the Engineering High Reliability Learning Lab (EHRLL), a grant-funded collaborative project between the Department of Health Policy and Management at the Harvard TH Chan School of Public Health and The Healthcare Systems Engineering Institute at Northeastern University.
By parents, for parents. Making it better for those that follow. That is what Courageous Parents Network is all about.
Thank you as always!
Three Courageous Parents Network families who have faced such surgery share the decision that was right for them and their child
Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss how they considered whether to have spinal surgery for their son and the role that palliative care helped them in making multi-faceted decisions. It was a ripple effect and we needed multiple doctors to consider the many dimensions.
The mom of two sons with mitochondrial disease talks about how she and her husband considered all the variables that went into their decision to ultimately forego spinal surgery for their son. It was all about quality of life. “I still don’t feel totally at peace with this because I have a visual reminder every day that I decided not to do this. But I know I made the best decision for him because I do not want him living in the hospital because of a surgery that he may or may not survive and that he will need to keep getting.”
The mom of a 12-year old boy with SMA Type 1 talks about her decision to go forward with spinal surgery for him. A long, intense and invasive process but he’s now doing so well and she’s so happy they made the decision to go ahead with the surgery.