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Seattle Single-Ventricle Family Support Group

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Northeast Branch - The Seattle Public Library

6801 35th Avenue Northeast

Seattle, WA 98115

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In July of 2018 my daughter was born with Hypoplastic Left Heart Syndrome. As my wife and I have navigated the challenges that come with having a single-ventricle child we have run into other parents who have all said that it would be great if there was a support group for families of children with this unique heart condition. This group will hopefully fill that void. The idea is to start forming a community where we can come together and support each other and share what we have learned as we navigate this difficult diagnosis, or we can just complain about those horrible orange feeding bags we have to use. This group will be open to any family that has a child with a single-ventricle heart in it, from the initial diagnosis during an anatomy scan to those that have had the Fontan and beyond.

Since this is will be the first meeting there will be a pretty simple agenda:

  • Those that are comfortable, share your story.
  • Discuss what we would like from this group.

If you have any questions about this group or the meeting please feel free to contact me through the link on this page and I will respond as soon as I'm able.

FAQs

Do I need to register for the meeting to come?

No, but it is helpful to have an idea of how many people will show up and the organizer does appreciate it.

What are single-ventricle heart conditions?

Seattle Children’s Hospital has a great webpage that gives a great introduction to the topic here, but in short single-ventricle defects include double-inlet left ventricle, hypoplastic left heart symdrome, unbalanced atrioventricular septal defect, tricuspid atresia, severe Ebstein’s anomaly, pulmonary atresia with intact ventricular septum, or heterotaxy

There seem to be a lot of people here connected to Seattle Children’s Hospital and my child is getting treated elsewhere, can I still come to the meeting?

Absolutely, you can. While it is true that this group is being started by families that attend the single-Ventricle Clinic at Seattle Children’s Hospital, you are still welcome (and encouraged) to come if your child is getting treat elsewhere.

I don’t want to register and give Eventbrite my personal information.

Totally understand, please come to the meeting anyways. This group is still in the very early stages of coming together and Eventbrite was just a means to an end to get us started. Still, it is helpful to the organizer to be able to collect the groups contact info for future events.




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Date and Time

Location

Northeast Branch - The Seattle Public Library

6801 35th Avenue Northeast

Seattle, WA 98115

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