From IVPF: Please help us prevent vp deaths
- Hi everyone:Here I am once again asking for your help in preventing these senseless vp deaths.For those of you who do not know me, I am Victoria Goldstein, mother to angel Sophie Isabelle, who died due to undiagnosed vasa previa last August 27th. When I found the vasa previa group, I committed myself to help increase awareness and education amongst the general community and the medical profession through a series of endeavors.Perhaps the most important is that we have contacted Dr. Yinka Oyelese, one of the foremost authorities on vasa previa, currently at Georgetown University Hospital, and he has agreed to write a research paper about vasa previa using the information from the IVPF group members. We need to gather information from at least 40 of us to make this study relevant. Dr. Oyelese is convinced that when published in the New England Journal of Medicine and the Journal of the American College of Obstetrics and Gynecology, this study will be the most potent study to date and might be the key to getting vasa previa tests to be part of standard care.So, having said all this, I am sending you a questionnaire that I would very much appreciate if you would answer and return to me via email. For those of you who have already responded, thank you so much, but we are still in need of other data. The challenge here is that we need copies of ultrasounds and or pictures of the placenta and pathology reports so he can use the information in his study. So far, we have collected very valuable data from more than 50 members of IVPF for the study. Nevertheless, to make this study medically and scientifically valid, there is additional information which we need to gather before the paper can be written.Would you please take a moment to answer the following questions:1- What was your age at time of your VP/VI pregnancy?2- Were you diagnosed with a low lying placenta or another placental abnormality at any time during your pregnancy? If so, did it correct itself?
3-How was the information that you had vp obtained? Was it from charts or
from word-of mouth?
4-How was your vp diagnosed?
5-Did you bleed at any time during your pregnancy?
6-Is it possible to obtain some documentation of your diagnosis (that you
actually had vasa previa/VI?)
7- Is it possible to obtain the sonographic reports?
8-Do you have pictures of the placenta? Do you have them on-line or can you
mail a copy of it to me?
I realize this is information which you might not have readily available and
might have to ask your doctor for but with your help, this will be the most
potent study yet on vasa previa and we are hoping this will help raise the
awareness level of vp amongst doctors to new heights.
Please respond to me directly via e-mail and if you have materials which you
need to mail, you may do so to my attention at:
1498 S.W. 1st Street
Boca Raton, FL 33486In your response, could you please just write that you authorize the IVPF and Dr. Yinka Oyelese to use your information for this study?
Thank you once again for your help.
Victoria GoldsteinPR CommitteeInternational Vasa Previa Foundation