I never would have guessed the development of the PROM Page, the amount of people that were about to find comfort in it, the many many stories that came and are still coming from parents that have suffered from a PROM experience. Sometimes I get e-mail from parents telling me that they were advised to terminate their pregnancies, but because they found the PROM page and learned that there might be some hope, they didn´t terminate and ended up with a healthy baby. I never would have guessed that this page might actually – indirectly – save life.
But sadly – so many parents suffer the loss of their baby or babies, and the pain that comes to my knowledge through this page and the PROM list are at some points very hard. I try to use that knowledge in order to keep the priorities in life right, and I try to value each moment with my family and friends.
The PROM Page was launched in January 1998. It consisted of some FAQ pages, a discussion forum and a simple form where visitors could submit their PROM stories. The stories were published “by hand” at the start. As the stories were moved into a database (MySQL) in 2000, the publishing became much faster and made the PROM page more alive and up-to-date. Today we are a handful of volunteers that are working with the content of the PROM Page, you might call it a “staff”. Without the support and inspiration from Sterling, Linda, Cara, Kay, Holly, Andrea, Wendy and Patti, the page would not be the same.
This is how the idea for the PROM page was expressed, in an e-mail from me (Inkan) addressed to the “Preemie-l” mailing list:
“As you know, doctors don´t have very much statistics about PROM, as it is so unusual – they say. But… I don´t want my PROM to be in vain! I want such a scary experience to be remembered so that perhaps in the future someone can find out more about it and maybe look for signs during the pregnancy so that it can be prevented. I want to help out in some way there, and this might be a way. I want to start up a “PROM Page”, and add your experience to it – with your permission.
Maybe it can help other women who experienced PROM to not feel as lonely. And – I hope – it might be found by somebody doing scientific research in this issue sometimes in the future.”
/Inkan, october 6 1997
The PROM mailing list was a newsletter for the PROM Page, placed at a German listserv in the beginning; Listbot. The list was set up as a discussion list, meaning that a member of the list could send an e-mail to the entire list, but this was not announced to the members. Never the less, in June 4 1999 Trish sent the first e-mail to the list introducing herself, and the discussion was started – the mailing list turned from a newsletter to a discussion list and the PROM mailinglist was born. From that day the list has been steadily growing. The list moved to the Kanalen server in 2000 and now the list has grown into a large and highly communicative list with members that are spread all over the world. As of 2005 there are over 200 members on the mailing list.
The PROM mailing list is the “back bone” of the PROM Page, and members on the list from time to time engage themselves into new projects resulting in more and better information at the PROM Page.
My personal PROM experience is so like many others. Our son Anton who was born premature due to PPROM is now (2011) an fourteen year old student. He is not suffering from any difficulties caused by the PROM or prematurity. In 2001 he became a big brother when Alex was born, also with PROM but thankfully not premature.
We travelled a bumpy road but reached a happy ending. We won´t have any more children – at least that is what I truly believe right now. I hope that the PROM page can live on and continue to offer help and support, and hopefully make a difference for someone.
Thank you for reading all this way!
Ingrid Renfors, called “Inkan” in Jönköping, Sweden