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The Heart of DMB: International Vasa Previa Foundation

When you get pregnant, you have all of these beautiful hopes and dreams… counting 10 fingers + 10 toes (or 20), seeing a button nose profile (or 2) on the ultrasound screen, feeling those kicks + hiccups, decorating a nursery…. you dream of the delivery, mommyhood and all that it has to offer. It’s all perfect…until you learn that all of those plans might not happen. 

At just 19 weeks, our world was rocked when one of our twins (Baby A) was diagnosed with a condition called vasa previa (VP). While it was terrifying, we quickly learned that this diagnosis would save our her life because without diagnosis, this condition has an estimated 95% mortality rate.

“Our goal is to eliminate infant death from vasa previa by raising awareness and providing evidence-based information to the general public and health care professionals about the detection and management of this potentially fatal obstetric condition.” – International Vasa Previa Foundation (IVPF)

The loss of an infant is a tragedy no family, mama or baby should ever have to endure, but knowing a single test and proper management could change this outcome… well, that is something to advocate for. 

Rarely reported, vasa previa occurs in 1 in 1200 births…meaning that if 1200 pregnant women read this, at least 1 pregnancy is likely to see vasa previa. Type 1 VP occurs when one or more of the baby’s placental or umbilical blood vessels cross the entrance to the birth canal beneath the baby.  When the cervix dilates or the membranes rupture, the unprotected vessels can tear causing rapid fetal damage.  When the baby drops into the pelvis, the vessels can be compressed, compromising the baby’s blood oxygen supply and causing oxygen deprivation. 

So what do you need to do??

If you or someone you love is expecting, it is crucial that a transvaginal color doppler ultrasound is done to locate umbilical cord placental cord insertion. If vasa previa is suspected in the second trimester, a repeat ultrasound in the third trimester should be done to confirm diagnosis and position of fetal vessels.  This one simple test that only takes minutes can save your baby’s life.

Risk factors include:
– a low-lying placenta or placenta previa in the second trimester (even if this resolves)
– bilobed or succenturiate-lobed placenta
– velamentous insertion of the cord
– in-vitro fertilization pregnancies
– multiple-fetal pregnancies
– history of uterine surgery or D&C

**It is important to note that although these risk factors increase risk, there are reported cases of women who have had none of the above risk factors, making it critical to be screened.

The International Vasa Previa Foundation has been around for 15 years and was started by parents who unfortunately experienced negative outcomes.  Their goal is to inform expecting parents of what questions to ask.  While the IVPF does not offer medical advice, they do point to research articles and materials to help parents make informed decisions with their medical team.  The IVPF has management guidelines that should be taken seriously and followed by health care providers and patients.  Unfortunately there is still such little awareness surrounding VP that tragedies are still occurring.

The IVPF believes that infant death due to vasa previa is an avoidable tragedy. IVPF recommendations are based on the consolidated results of science, technology, and its experience with hundreds of vasa previa families. Infant death and injury can be prevented when vasa previa is prenatally diagnosed and Cesarean section is performed at 35-36 weeks.”

 After diagnosis, with the research done by the IVPF, I was on modified bedrest effective immediately and admitted for hospital bedrest at 28 weeks, per the guidelines, with a c-section planned at 34 weeks.  While it was not ideal and certainly not what I hoped for in my pregnancy, I knew I was doing what was best for my babies. We didn’t quite make it to our goal of 34 weeks, but when I went into labor at 31 weeks, the medical staff was able to deliver two beautiful little girls.  After 25 + 28 days in the Neonatal Intensive Care Unit, we were able to bring home two healthy and happy little girls.  20 months later, with another babe on the way, I feel blessed to have had a diagnosis because it meant life. 

How can you involved?!

1.  Donate! The IVPF is a not-for-profit charity in the USA.  All monies received by the IVPF are used towards furthering the aims of the organization (raising awareness and providing support) and participating in research activities about vasa previa. Click here to donate! 

2.  Join the IVPF! IVPF participating members are actively working to spread awareness of vasa previa throughout the world! Click here to request a membership form! 

Get screened and advocate for your baby. You just may save a precious life.

** A special thanks to the International Vasa Previa Foundation for the outstanding research and awareness that is being done to help families like us have healthy and happy outcomes.

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2 Responses to The Heart of DMB: International Vasa Previa Foundation

  1. Natasha Donnolley January 30, 2017 at 3:57 pm #

    Thanks for raising awareness of vasa previa Lindsey and for promoting the work of the IVPF. You might just have saved a life! Natasha Donnolley (Vice President and Director of the International Vasa Previa Foundation)

  2. Carrie Chambers February 1, 2017 at 11:56 am #

    Thank you for this! I had a D&C and never knew this was a possible complication. I didn’t have this issue with baby #1, but will keep it on my radar as we start to think about baby #2.