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Winter 2004 Newsletter
Vision and Mission
To create a world without vasa previa deaths while supporting those whose lives have been impacted by it. To raise awareness about vasa previa and to adjust the medical rules and protocols in such a way that fatal outcomes associated with vasa previa can be prevented.
Research on Vasa Previa - Update
Phase one of our research project has been completed. The data has been analyzed and submitted to one of the most prestigious OB journals. In addition, Dr. Oyelese's paper on vasa previa management was published as the cover article in Contemporary OBGYN (circulation 40,000), in the November 2003 issue Vasa previa: Are most perinatal deaths preventable?
Several other papers on vasa previa have been published recently in top medical journals, bringing even more attention to this issue. Some of the papers include:
- J Reprod Med. 2003 Oct
Association of vasa previa at delivery with a history of second-trimester placenta previa.
Francois K, Mayer S, Harris C, Perlow JH.
Department of Maternal-Fetal Medicine, Good Samaritan Regional Medical Center, 1111 East McDowell, Phoenix, AZ 85006, USA.
OBJECTIVE: To evaluate whether vasa previa at delivery is associated with a history of second-trimester placenta previa. STUDY DESIGN: Retrospective, case-control study of all vasa previa cases at Good Samaritan Regional Medical Center from January 1, 1991, to May 1, 2001. Cases were identified by ICD-9 codes and confirmed by chart review. Each case was matched in a 1:4 ratio with controls based upon normal placentation at delivery, ultrasound documentation of midtrimester placental location, maternal parity and gestational age at delivery. RESULTS: During the study period, 13 cases of vasa previa were identified. Nine cases (9/13, 69.2%) of vasa previa at delivery had a second-trimester placenta previa as documented by midtrimester ultrasonography, whereas 2 controls (2/52, 3.8%) had a second-trimester placenta previa (P .000001, OR = 56.3, 95% CI = 8.9-354.1). CONCLUSION: There is a highly significant association between vasa previa at delivery and a history of second-trimester placenta previa.
- J Am Board Fam Pract. 2003 Nov-Dec;16(6):543-8.
Vasa previa diagnosis and management.
Lijoi AF, Brady J.
Department of Family Practice, York Hospital, York, Pennsylvania.
Introduction: Vasa previa is an uncommon obstetrical complication that poses a high risk of fetal demise if not recognized before rupture of membranes. It is vital that providers recognize risk factors for vasa previa and diagnose this condition before the onset of labor so that fetal shock or demise is prevented. METHODS: We report a patient with a bilobed placenta and perinatal hemorrhage caused by vasa previa that was not detected with antepartum ultrasound. A review of the literature published between January 1965 and August 2002 was conducted using a MEDLINE-assisted search using the key words "vasa previa," "bilobed placenta," and "succenturiate." RESULTS: Risk factors for vasa previa have been identified. Advances in ultrasound have led to improved ability to diagnose this condition. Evaluation of patients in high-risk groups with transvaginal color flow Doppler ultrasound should be considered. The accuracy of this technique for diagnosing vasa previa is not known, nor is the true incidence of this condition. Antepartum diagnosis is associated with improved outcomes but does not eliminate morbidity and mortality. CONCLUSIONS: A high index of suspicion for vasa previa at the time of amniotomy is required, because all cases cannot be diagnosed before the onset of labor.
Spotlight on Sophie's Walk for Vasa Previa 2004- August 22, 2004
The International Vasa Previa Foundation's most important fundraiser of the year took place around the world on August 24, 2003. Volunteers from the IVPF, friends, and sponsors came together to organize the Walk in cities around the world. During 24 hours, someone, somewhere walked for this cause! More than 500 people walked in 33 cities worldwide, raising almost $25,000 for education and awareness of vasa previa. Thank you to all the volunteers, friends, donors and sponsors who made this possible.
Please consider organizing a Walk in your city in 2004! The Walk will take place on Sunday, August 22, 2004. If you are interested in organizing a Walk, please contact us immediately at sophieswalk@.... And don't forget to visit the International Vasa Previa Foundation website, http://www.vasaprevia.org/walk to see pictures of the 2003 Walk!
- The International Vasa Previa Foundation is once again operating as the International Vasa Previa Foundation. We will no longer do business under the name Vasa Previa Foundation.
- Debi Pederson has been appointed Vice President of the IVPF. She can be contacted at debi.pederson@...
- Several new articles have been published about vasa previa including a story about Meredith and Stephen Kirby's daughter Charlotte in the Penn Stater: Charlotte's Legacy, an article about Jackie Firth's vasa previa experience in the Leicester Mercury: They Couldn't Find the Baby's Heartbeat. All I Could Hear Was the Dull Echo of My Own ... Our Little Girl Had Gone. the Giammarino family in the New Jersey Star Ledger: One short life, one lifelong mission and an informational article in Pregnancy Today: A Severed Connection Early Detection of Vasa Previa Can Save Lives. IVPF Holiday Cards are available on our website. Click here to see a preview. The IVPF is selling the cards at a reduced rate of $16 for the next holiday season (20 cards). Please place your orders at the IVPF Store. Orders will be shipped within two days of being received.
- More and more people are finding the IVPF website and email groups. As of January 30, 2004 there are 60 participating members of IVPF, 295 IVPF email group subscribers and 153 Vasa_Previa email group subscribers.
- You can now make your donations to the IVPF through the internet via paypal. Click here to donate to IVPF with PayPal. Its fast, easy and secure.
Chat
The IVPF chat room is open to everyone who would like to talk about vasa previa and their experiences. Chats are currently scheduled for the following days and times. But feel free to stop by anytime, there might be someone there. Contact Cindy.Paris@... if these times are inconvenient for you or you would like to volunteer to host a chat yourself.
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Saturdays |
Wednesdays 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 Pacific Standard Time) |
There is also a Members' Meeting the first Wednesday of every month. These meetings are conducted in the above chat room and are a pipeline right to the Foundation's officers. The Members' Meeting times vary each month in order to accommodate time differences of IVPF members around the world. Keep an eye out for email notices about the timing for these meetings each month. The next meeting will take place on Wednesday, 3 March 2004 at 19:00 GMT (1pm CST). Reminder notices will be sent out through the Newsletter email group.
Stories needed
If you've visited the IVPF website before, you might have noticed that there is a member page with 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 vasa previa, 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!
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 appropriate committee chairperson for more information or send an email to Info@.... Specifically we are currently looking for people to help in the following areas:
- Public Relations Committee
The public relations committee is looking for volunteers to set up International Vasa Previa Foundation informational booths at women's health fairs and medical seminars, and good writers to submit vasa previa articles to major magazines. If you can help with these activities, please contact the committee chairperson at: Victoria.Goldstein@... Fundraising Committee
We are looking for a new Chairperson for the Fundraising Committee as well as 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@... - Education Committee
Marlou van Djick has accepted the post of Education Committee Chairperson. Marlou can be reached at Marlou.van.dijck@... if you would like to volunteer your services to this committee.
IVPF needs participating members to help run the organization through committee work and by voting on important issues. Please contact us at Info@... if you would like to be a participating IVPF member! Research Committee
We are looking for a new Chairperson for the Research Committee as well as volunteers 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. Contact Research@...
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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 directors. 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@...
- The Internationall Vasa Previa Foundation sponsors an email discussion group. It is called Vasa_Previa and is open to anyone who's experienced vasa previa in any way. To join this group visit http://groups.yahoo.com/group/Vasa_Previa. Please be prepared to briefly explain your vasa previa story before we approve your subscription to this group.
- IVPF Executive Meeting Minutes are available online to any member of the IVPF email (newsletter) group. To become a member of the group, send an email to IVPF-subscribe@yahoogroups.com The meeting minutes can be found at http://groups.yahoo.com/group/IVPF/files/
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P.O. Box 272293
Boca Raton, FL 33427-2293
IVPF Website: http://www.vasaprevia.org
IVPF Forum: http://www.vasaprevia.org/forum
IVPF Chat Room: http://www.vasaprevia.org/coolcafe/login.asp
E-mail: Info@...
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