IVPF Spring 2002 Newsletter
It only takes a moment to diagnose life
It only takes a moment to diagnose life...
Spring 2002 Newsletter
Welcome to the Spring edition of the International Vasa Previa Foundation newsletter. This newsletter is published to inform you of the work Foundation members are doing and will appear quarterly. We are currently working on the following activities:
Research on Vasa Previa (We still need your help!)
The IVPF is participating in an important study which hopefully will yield what promises to be the most important paper ever written about vasa previa. However, to achieve this goal, we need your help urgently. With your help, this study will include the information from close to 100 women. If you would like to be part of this study, please visit the following link: http://www.vasaprevia.com/education/questions.htm or email Victoria Goldstein (victoria.goldstein@...) and she’ll send you a questionnaire. For those who have already filled in the questionnaire: many, many thanks!
Officializing the Foundation
We are excited to report that IVPF will soon have both a UK and a Netherlands chapter. Both groups are working hard with the IVPF to bring awareness of vasa previa in these parts of the world.
IVPF committees are hard at work spreading the word about vasa previa. A current list of all committees and members is available at http://groups.yahoo.com/group/IVPF/files. We are still in need of volunteers for the different committees. If you are interested, please contact the committee chairperson(s) for more information.
Highlight on the Educational Committee:
- A Spanish translation of the pressroom has recently been added to the website.
- The IVPF Research committee continually researches new articles on vasa previa information and submits them to the Web committee for inclusion in the publications section of the website.
- The research questionnaire is available on the website at http://www.vasaprevia/education/questions.htm. A hot button scrolling along the bottom of the front page takes you there too.
- An IVPF PowerPoint presentation about vasa previa has been created for educational purposes. Ouisa Paris was kind enough to put the finishing touches and animation to create a very professional presentation. It is being reviewed by the experts to ensure this presentation is comprehensive and will serve to raise awareness both amongst the medical and the general communities.
- A video about IVPF and vasa previa is in the works. Meredith Kirby is working with Dr. Jasmine Bird of Pennsylvania State College, whose film department will be working on producing it this fall. Funds for this project are urgently needed.
- The Education committee is also hard at work on production of a brochure that will be targeted at women and the general population. Ideas on how to cover the costs of production are most welcome. Please contact Meredith Kirby, Education Committee Chairperson at Meredith.Kirby@... for more information about this committee.
- Carol Prentice has been hard at work in the UK and her story and information about vasa previa and IVPF have appeared in UK Parents, Motherbliss.com, Evening Times and Natural Parenting. Read about Rebecca's miracle birth and about vasa previa.
- More and more people are finding our website and email groups. As of April 30, there are 23 participating members of IVPF, 171 subscribers in the IVPF email group, 99 in the Vasa_Previa email group, 26 in the VP-angels email group and 32 in the VP-Miracles email group.
Congresses and ExposIVPF will be attending the following congresses/seminars and expos:
- Phil Millard, IVPF Webmaster, is on a fundraising weight loss mission. The Get Phil Thin campaign has raised almost $200 USD. His goal is to lose 25 lbs. and so far he is more than three quarters through his goal. If you are interested in following Phil's progress, and donating to IVPF, send him an email at phil.millard@...
- A grant application is being submitted by Meredith Kirby to Koch Funeral Home. If IVPF is granted these funds, they will be used to produce the IVPF educational video this fall.
- Emma Stewart theatre group in the UK is performing a benefit for the IVPF this summer.
- Eduardo Macadar will be performing a music concert this summer in South Florida to benefit IVPF.
- Meredith Kirby is donating her upcoming yard sale proceeds to the IVPF.
If you are interested in attending any of these or other events, please contact victoria.goldstein@...Chat
- COGI, World Congress on Controversies in Obstetrics - Washington, D.C. June 20-23, 2002
- March of Dimes Expo - Chicago, IL, August 2002
- Regional Meeting, ACOG - Orlando, FL, September 2002
- World Ultrasound Congress - New York, November 2002
The IVPF chat room is open to everyone who would like to talk about VP and their experiences. The chats are hosted by members of the IVPF and are currently scheduled for the following days and times. But feel free to stop by anytime, there might be someone there.
17:00 hrs GMT (5:00pm Greenwich Mean Time)
18:00 hrs Netherlands (6:00pm)
12:00 hrs EST (12 noon Eastern Standard Time)
11:00 hrs CST (11:00am Central Standard Time)
09:00 hrs PST (9:00am Pacific Standard Time)
20:00 hrs GMT (8:00pm Greenwich Mean Time)
21:00 hrs Netherlands (9:00pm)
15:00 hrs EST (3:00pm Eastern Standard Time)
14:00 hrs CST (2:00pm Central Standard Time)
12:00 hrs PST (12:00 noon Pacific Standard Time)
We're very happy to announce the birth of our newest vasa previa miracle babies:Tyler AustinI had Tyler on August 31, 2001. I still shudder when I think about what would have happened if I hadn't already been in the hospital (for induction) when my water broke and two of the umbilical vessels ruptured. The outcome would have been very different. Whenever he keeps me up in the middle of the night (like now!!) and I get frustrated, I thank God for the chance He has given me.-Julie AustinCharles EllaI am home from the hospital one day after having an ELECTIVE C-SECTION, where vasa previa was diagnosed during my c-section (not before), along with a uterus so thin that when the doctor began the c-section she simply went to move the uterus away from my bladder and the scar from my previous c-section split open immediately. The surgeon says it is a miracle we are both here and well. I am still in shock over what could have happened and unbelievably grateful that it didn't. The doc says if the induction had succeeded we both could have died - me from the burst uterus (which she said was just waiting to happen) and my son from the vasa previa.
Katherine Orly GoldbergI apologize for my brief absence from the group, but it was for an excellent reason! On Wednesday, March 13 (35 weeks, 1 day), I gave birth by elective C-section to beautiful Katherine (Kate) Orly. They whisked her off to the NICU, but not before my husband and I heard her let out a wonderful cry.-Rebecca, Andrew and baby KateMeagan Phillips
My wife's water broke and labor looked normal until the doctor came in and was clearing the membrane that holds the water. After he did that, he was trying to insert an internal monitor to check the strength of her contractions. Then they couldn't find the baby's heart beat, and before we knew it they did an emergency c-section. She was very pale and not breathing well, she was in shock from loosing a lot of blood. This was Thurs. 3/28, we brought her home yesterday, Wed. 4/3, healthy and doing well. They sent the placenta to pathology to find out what went wrong and vp is what they found. Until I found this website I didn't know what vp really was, and also how blessed we really are that she survived. Thank God is all I can say. The more I find out about vp the luckier I feel that she survived.-Richard and Dana PhillipsStories still neededIf you've visited the IVPF website before, you might have noticed that we have a member page with the stories of our vasa previa survivors and angels. These personal experiences give a very good view on how vasa previa happens, its dangers and how it can be managed. It is very useful for everyone who wants to read more about VP, including doctors and women who have been diagnosed with it. If you want to help the world to get a better insight on vasa previa, please send your story to info@... and give us permission to publish it.Volunteers needed!
Did you know.....That vasa previa can be detected as early as the 16th week of pregnancy? With the use of a color doppler ultrasound, a radiologist or OB who is LOOKING for vasa previa will be able to find it as early as the 16th week of pregnancy. It has also been found by astute birth attendants prior to birth by last minute transvaginal ultrasound, palpation, and even by flashlight!
- Participating Members
- IVPF needs participating members to help run the organization through committee work and by voting on important issues. Please let us know if you would like to be a participating IVPF member!
- Research Committee
- Volunteers are needed in the research committee to post IVPF information on internet pregnancy boards and forums, to collect vasa previa stories from the internet, and to look for newly published information about vasa previa.
- Membership Committee
- The IVPF Membership committee is looking for a volunteer to contact people who email the IVPF or post in its guestbook and invite them to join IVPF or subscribe to the email groups. Training and sample materials are available. Anyone who is comfortable with writing would be perfect for this task. If you can help with these activities, please contact the committee chairperson at: cindy.paris@...
- The public relations committee is looking for volunteers to set up vasa previa informational booths at women's health fairs and medical seminars. If you can help with these activities, please contact the committee chairperson at: victoria.goldstein@...
- Fundraising Committee
- The Fundraising committee is looking for volunteers who are enthusiastic and willing to help us achieve our goals. If you want to contribute to the IVPF by donating a few of your hours per month on applying for funds and charities, please let us know. Send an email to Victoria Goldstein, currently head of the Fundraising Committee at victoria.goldstein@...
- There are two levels of membership open to the public. The first is general membership and simply belonging to one of the email groups automatically entitles you to general membership. There is no obligation other than to support IVPF goals. The second level of membership is participating membership. We would love to have each and every one of you as participating members! Again, there are few obligations. The main one being that you will be responsible for voting once per year for IVPF officers. At this time there is no fee to join. If you would like to join IVPF at the participating level, please send your request to info@...
^i^Please feel free to react on any subject in this newsletter. Amy, Marlou and Cindy can be reached at: info@.... Thank you for your help and interest in helping us raise worldwide awareness of this heartbreaking condition!
- Because there appeared to be a growing need from VP-angel and VP-miracle parents to have additional groups, there are now THREE email groups for people who've experienced vasa previa.
- The first is the original group called Vasa_Previa and is open to anyone who's experienced vasa previa in any way. To join this group send an email to: Vasa_Previafirstname.lastname@example.org
- The second group is called VP-angels and membership is restricted to those who've had the unfortunate luck to lose a child to vasa previa. To join this group, send an email to: VPemail@example.com
- The third group is called VP-Miracles. It is especially for parents who have gone through a vasa previa pregnancy (prenatally diagnosed or not) and miraculously still have their child. To join this group, send an email to: VP-Miraclesfirstname.lastname@example.org
- IVPF Executive Meeting Minutes are available online to any member of the IVPF email group. To become a member of the group, send an email to IVPFemail@example.com The meeting minutes can be found at http://groups.yahoo.com/group/IVPF/files/IVPF%20Meeting%20Minutes/
IVPF Website http://www.vasaprevia.com
IVPF Forum http://www.vasaprevia.com/forum
IVPF Chat Room http://www.vasaprevia.com/coolcafe/login.asp