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Hello to all. My name is Tricia Christensen and I am in the early stages of running a support network for families in the California North Bay area. I'd like to say I was drafted into this by the birth of my wonderful son, Gerard, who has complex congenital hearth anomalies.
In short the services my group Hearts for Hearts' Sake aims to provide are : parent-to-parent support, parent matching, social gatherings and a quarterly newsletter. The newsletter will be a means of relaying pertinent medical information, introducing local families and their children, featuring local cardiologists and surgeons ,and providing affirmation, support and the sense that the reader is not the ONLY person in the world with a child with a heart defect. Through distribution of the newsletter and pamphlets, I also hope to encourage more families to join our group and database, thus expanding our other services.
Early in the formative process of starting our network, I made the decision not to try to offer support meetings on a regular basis. In speaking with other directors of groups like mine, I found that a number of groups had difficulty keeping the meetings going after an initial surge of interest. As children grew older and were "fixed," or, as unfortunately, some families lost their children, interest in a group based solely on support meetings began to wane. I know that this is not always the case. However, I felt that by offering more of a network that was based upon one-on-one contact, and that would actively solicit new members by staying in contact with the "heart" hospitals and their employees, our group would have a better chance of staying in place for all time rather than a few years.
As our database of family members grows, we will increase our numbers of "contact" parents, those parents who will counsel and aid incoming members to the group. It is my goal to try to match every family that comes in with a contact parent who is in like circumstances. This will not always mean defect to defect. A parent might be desirous of speaking with someone whose child's defects were diagnosed prenatally, whose child had a particular doctor, or who has a child in the same age range. So as I write up each new family, I try to gather as much information as I can, such as age, siblings, hospitals, surgical procedures, diagnosis,and physicians.
I had also been advised by others that it is important to make sure that each contact parent gives roughly the same quality of support to incoming families. Parent matching survives or fails by the efforts and amount of support offered by contact parents. With this in mind, I will soon be coordinating a training session for all parents who would like to provide counseling for others, so that I can trust to the quality of support that will be received by incoming families.
As for other forms of support, mainly monetary, we are as yet sort of coasting along with a patchwork of offers from some local organizations. One of the most difficult aspects of forming this group thus far has been that nonprofit status is well out of our reach financially. It is a vicious circle where one cannot raise the money to gain nonprofit status simply because one is not nonprofit already. I am hoping at this point for one of two things to happen. We are currently working closely with Mended Hearts, a national organization mainly for adults who have had heart surgery or heart disease. We are hoping that Mended Hearts may be able to shelter us under their status through affiliation. Another possibility is that our organization may be supported by the UCSF pediatric council, but as yet no decision has been reached.
Our first newsletter was graciously copied by the AHA, and the cardiology department at UCSF generously paid to mail and distribute it. Clearly both UCSF and Mended Hearts recognize the need for such an organization to exist, but neither have given us a firm commitment of financial support.
I am eternally optimistic that the support will be there, somehow, as I begin to realize the needs of running this sort of group. I certainly need another phone line, as I am always Online working on my web pages and trying to promote our group through the internet. And I can certainly also envision my mailing costs growing tremendously as more people join our group.
Running this group thus far has been such a challenge and such areward. Daily, I am told by new members how MUCH they NEEDED this type of support to face the rigors of having a child with heart problems. They echo my own thoughts, when I looked for support and found nothing available. I would urge all who are considering forming a group to, as the commercial says, "Just Do It!" It is a way of healing the self as well as the many others who deserve support, empathy and information as they raise their incredible "heart" children.
Tricia Christensen
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