CHERUBS in the hospital

I was just sitting here in the hospital and thinking how I could help parents with CDH babies. I started to think, what if I could be an on-call parent here at our hospital, Sacred Heart. I went over to the NICU last night just to say hi, and asked them if they think I could start something here at the hospital, like a support group for CDH parents and families. They told me that it was a great idea. I also talked to the charge nurse, and I asked about how many CDH babies they have had since Ayda, and she told me that they have seen 30! I had no idea so many where here in Spokane. I new that Ayda was the first for a while, but it has really gone up. So, I just wanted to see how I would start something here at the hospital. I don’t have to call it CHERUBS, but I could have it just like “ CDH support” or something. It would kinda be like Child Life. This is what I thought I could do

Whenever the NICU gets a CDH baby, they could ask the parents if they want to talk to a CDH parent or On Call CDH parent, and if they say yes, I can come and talk to them. I downloaded a whole bunch of material, and I will make packets and give it to them along with my intro letter. Then if they decide they want more communication with me and so on.


So, how does that sound

That sounds great Shanell!!
Am I able to do the same thing for our hospital here in Townsville, Australia? Or is this what the Surviving/Greiving Support is for? It's a great idea Shanell :)

Rebecca, Danielle can tell you all about what the Aussie group does for hospitals and I'm sure they will take any help you want to volunteer for! :)

It's all pretty much at the hospital's discretion. Before they could start giving my info out everything had to be read by the directors and in the NICU listings they had to make sure I wasn't representing myself as an "employee" of the hospital. Maybe it won't be so stringent at other hospitals, it seems it feast or famine with CDH babies :)

Shanell I really think that it is a great idea. I just found out a couple of weeks ago and I was going crazy because there was not a lot of information at that time. I really think that talking to somebody that knows and lived thru CDH would have help me a lot during those hard days; and the days to come. I am myself think of doing something like that here in my city, there has been a couple of cases a year but we still do not have the ECMO machine available. So I am thinking of reaching the Cherubs representative of the state to find out what I can do. I am still on hte process but still want to start soing something for the future cherubs in Texas.
Best wishes, keep us posted.

Marilu-
Melissa Kelly is Texas State Rep.
Her e-mail address is mkelly@cherubs-cdh.org.

I don't think there's a Rep/CDH contact in Alabama. Dawn, how would I go about becoming an Alabama Rep?
From older Silver Linings, I noticed there was a rep from ALabama, but when I tried to call her phone number, it had been disconnected.

Hi Leigh - email Stephanie and let her know that you are interested in being Alabama's state rep. I think you would be great! Stephanie is the State Rep. coordinator. Her email address is: solivarez@cherubs-cdh.org

Thank you Stephanie, I wrote it down, I am still in and out of doctors so as soon as I get a chance I will contact her.

Rebecca

Jo is the Aussie volunteer co-ordinator, she lives in Brisbane. You can contact her at volunteer@cdh.org.au and she can speak with you re Townsville!

Shanell why don't you try putting some CHERUBS CDH packets together for the families? It might be a better way to give them all the info they need. You can include your name and number. That way, if a parent does not feel like talking at the time, they will have your info and will not feel as pressured. I did that for my Children's hospital NICU and for my local birthing hospital's genetic center.