Neistinn‘s Children’s Heart Foundation in Iceland
I’m a mother of two, my daughter who is about to turn 15 has a complex congenital heart defect and has had several heart operations throughout her life at Children’s hospital in Boston.
When I was pregnant with her and found out that she had CHD, I immediately started to look if there was a community where we could seek support and that’s when I got to know Neistinn. There, I immediately received invaluable help and support during a difficult time. I knew then that I wanted to help others when I had the strength to do so. I became a part of the organization after her first operation as a board member, then Chairman and today I am the only employee of the organization. My top goal for Neistinn is that all parents of children with congenital heart defect will know that they can contact us and get the help they need.
Neistinn‘s Children’s Heart Foundation in Iceland was founded in 1995 by a group of parents. Neistinn’s goal is to make medical information for parents regarding children with congenital heart defects readily available, as well as upholding parents’ rights to assistance. Both can require a lot of translation and interpretation for the parents as procedures, as well as some words and concepts, can be hard to understand, especially when you are dealing with the shock of learning about what awaits your child. Neistinn also runs an endowment fund to support heart families financially.
Neistinn helps families who have children with a congenital heart defect; educates them about what lies ahead and supports them socially and financially. Since we are a small nation, no surgical heart operations on children are performed in Iceland and therefore all children who need such an operation have to go abroad to have them. The children either go to Lund in Sweden or Boston in the USA.
It can be very difficult for these families to be away in a foreign country, away from their family and friends for a long time, and to deal with the stress of having their child operated on along with the financial stress that inevitably is a part of the package. We put a lot of effort into trying our best to prepare and support them for the task ahead. We counsel the parents and connect them with other families that have children with the same defect or similar. Since we are a parent organization, we understand what others are going through and can guide them through our experience. We organize events for families and events that are just for the parents so they can get to know each other and find support in other families who have been through the same thing as them.