Petition Closed

If either you or a loved one is currently expecting, I urge you to read and sign this petition.  Expecting parents put all of their trust into the medical community to ensure the delivery of a healthy baby.  Sadly, sometimes bad things happen despite the best efforts.  But how would you feel if you lost your baby to something that could have been both diagnosed and properly managed?

Babies do not need to die because of vasa previa.  But many do.  The technology exists to detect vasa previa, but all too often it is not diagnosed because awareness of the simple measures needed to detect the condition prenatally is not the standard of care.  However, infant death and injury are preventable when vasa previa is prenatally diagnosed.

Both Canada and the UK have guidelines in place on how to effectively diagnose and manage a patient with vasa previa.  Australia is currently looking into writing guidelines as well.  My desire is for the United States to do the same.

We are petitioning the ACOG specifically as it works primarily to:
•    Serve as a strong advocate for quality health care for women.
•    Maintain the highest standards of clinical practice and continuing education for its members.
•    Promote patient education and stimulate patient understanding of and involvement in medical care.
•    Increase awareness among its members and the public of the changing issues facing women's health care.

As a mother who lost her first child, Jake, to undiagnosed vasa previa, I am asking you to support this petition to the ACOG with the goal being that they will put into place a standard of care for vasa previa which, in turn, will hold the medical community accountable for managing this condition properly.

I realize that nothing will bring Jake back, but we all have the power to help spare other families from the pain and tragedy of also losing a baby to vasa previa.  Please sign this petition today and help stop neonatal death from vasa previa.

Thank you for your support.

Jenna Steckler

 

Letter to
Clinical Practice The American Congress of Obstetricians and Gynecologists
I just signed the following petition addressed to: The American Congress of Obstetricians and Gynecologists (ACOG).

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Standardize routine testing and a protocol for management of vasa previa

I am writing to you as a concerned citizen to urge you to standardize care for the diagnosis and management of vasa previa.

As you know, vasa previa is a condition in which fetal blood vessel(s) from the placenta or umbilical cord crosses the entrance to the birth canal, beneath the baby. Current studies in Australia show a 1:750 incidence rate.

Undiagnosed, the condition has a high fetal mortality rate (50-95%). This can be attributed to rapid fetal exsanguination resulting from the vessels tearing when the cervix dilates, membranes rupture or if the vessels become pinched off as they are compressed between the baby and the walls of the birth canal.

The aberrant vessels result from:
Velamentous Insertion of the Umbilical Cord
Multi-lobed placenta (bi-lobed Placenta or succenturiate- lobed placenta)
Pathology

Little is known about the cause of these conditions. The most widely recognized theory is called trophotropism. According to Dr. Harris Finberg, trophotropism in placental tissue can be compared to the tendency of a plant to lean towards the sun to get the light it needs to survive. Since the lower segment of the uterus is not as nourishing as the upper segment, the placenta will remodel itself upwards to reach more nourishing tissue.

As the placenta remodels, new growth may occur away from the location where the cord inserts into the placental resulting in velamentous cord insertion. Or the remodeling may leave the placenta in lobes connected by unprotected blood vessels running through the membranes between the lobes (bi-lobed, succenturiate lobed placenta).
Vasa previa can result from low-lying or placenta previa, where unsupported fetal vessels from these conditions cross the internal os, between the baby and the birth canal.

Warning Signs
Vasa previa might be present if any of the following conditions exist:
• velamentous cord insertion
• multi-lobed placenta (bi-lobed placenta or succenturiate-lobed placenta)
• low-lying placenta or placenta previa (even if it corrects itself!)
• pregnancies resulting from in-vitro fertilization
• multiple pregnancies
• maternal history of D&C or uterine surgery

Management
When vasa previa is both detected and managed properly prior to labor, the baby has a virtual 100% chance of survival.

Vasa previa can be detected during pregnancy with use of transvaginal sonography, preferably in combination with color Doppler. Women with the above risk factors should have this test to rule out vasa previa.

When vasa previa is diagnosed, elective delivery by cesarean before labor begins can save the baby's life. Ideally, it should be performed early enough to avoid an emergency, but late enough to avoid problems associated with prematurity. The International Vasa Previa Foundation (IVPF) recommends hospitalization in the 3rd trimester, delivery by 35 weeks, and immediate blood transfusion of the infant in the event of a rupture.

Steroid treatments can help accelerate the maturation of the baby's lungs. While an amniocentesis can assess fetal lung maturity, it is not typically done. Some doctors may wish to do it at 35 weeks, provided there is no uterine activity, and then delay delivery to 36 weeks if the lungs prove not to be mature. However, at repeat amniocentesis is never recommended and in those cases the baby is simply delivered at 36 weeks.

When there is bleeding during pregnancy, investigation for the source of the blood is necessary. If the blood is determined to be fetal (from the baby), immediate action must be taken to assess the condition of the baby.

The ACOG states on it’s website that it works primarily to:
• Serve as a strong advocate for quality health care for women.
• Maintain the highest standards of clinical practice and continuing education for its members.
• Promote patient education and stimulate patient understanding of and involvement in medical care.
• Increase awareness among its members and the public of the changing issues facing women's health care.

You may already be aware that Canada and the UK both have vasa previa guidelines in place. Australia is currently looking into writing guidelines as well. I am asking you to do the same in the United States. Please maintain the highest levels of health care in the form of a specific standard of care outlining how to diagnose and properly manage a patient with vasa previa.

The International Vasa Previa Foundation recommends the following guidelines in terms of risk factors (who should be tested), diagnosis, and management of vasa previa. These recommendations are based on the consolidated results of science, technology, and its experience with hundreds of vasa previa families.

Risk Factors:
• Low-lying placenta or placenta previa
• Mulit-lobed placenta (ie bi-lobed or succenturiate-lobed placenta
• Velamentous insertion of the cord
• In-vitro fertilization pregnancies
• Multiple pregnancies
• History of uterine surgery or D&C
• Painless bleeding

Diagnostic Testing:
• Transvaginal color Doppler ultrasound for women with the above risk factors
• Document normal central umbilical cord placental insertion during all routine obstetrical ultrasounds

Management:
• Pelvic rest
• Hospitalization between weeks 30-32
• Delivery by c-section at 35 weeks
• Immediate blood transfusion and aggressive resuscitation of the infant in the event of a rupture

As you can see, infant death and injury due to vasa previa is an avoidable tragedy. Thank you for your consideration in this matter of standardizing care for vasa previa.

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Sincerely,