Advocacy in Action

Creating a resource for families facing heart surgery

Creating a resource for families facing heart surgery

Hello, my name is Jamie Burch. I am a former NWDSA Board member, and my husband and I have two daughters. My younger daughter, Karley, is an energetic 3rd grader with Down syndrome. When Karley was four months old she had open-heart surgery. My husband and I did not feel like we had a lot of resources or information about what we were going through, and we would have loved the opportunity to connect with another family who had had a similar experience and made it through.

I am working with the NWDSA to create a book of stories for other families whose children are facing heart surgery. It will include stories from local families who have children that have had heart surgery or a cardiac procedure. The booklets will be distributed through the NWDSA, as well as in the offices of pediatricians, cardiologists, cardiac surgeons, and hospitals.

I am very passionate about this project because my family’s experience would have been much better if we had met a local family who had experienced what we were going through. It would have prepared us and kept us from feeling so alone, and hearing someone else’s story and seeing their child would have been very reassuring. If I had had a resource like this then maybe I could have felt more connected, ready, and reassured.

This is where we can come together to help families who will be where we have been before. If you like the sound of this project and feel your story would benefit other families I would appreciate your support. I would like to collect your story if you are willing to help.

To make this process as easy as possible I am willing to help get your story to the NWDSA in whatever way that works best for you. We could discuss possible talking points or ideas about what you might want to tell others about to get you going; I could type up your story over the phone or Skype and email it to you to edit; you could type up your own story and email it to me to review, or whatever it takes to collaborate. If you have pictures of your child before and during surgery as well as recent ones that you could share that will also be a key component of the booklet.

Even if you aren’t sure if your story is worthwhile I guarantee you it will be to someone whose child is facing the same surgery or procedure yours did. Your story is incredibly valuable! I look forward to hearing from you and hope we can work together by sharing your story and pictures of your child.

The NWDSA will maintain editorial supervision and oversight of this project. We welcome your contributions! Please contact Jamie Burch at 503-704-3883 or butterflyburch@yahoo.com for more information.