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Claudia’s ‘Vasa Previa’ Story

My name is Claudia DiVirgilio and I would like to share my story with your readers and listeners. My story deals with the loss of a twin son due to a condition that needs much attention called vasa previa. On January 12, 2005 my son Matthew died to a condition called vasa previa. Until labor I did not know I had this condition as I had seemed to have had a pretty normal pregnancy. After being induced at the hospital and spending over five hours in labor everything suddenly changed.

When there was chaos and the doctors and nurses where taking me quickly down the hall to the operating room and “code pink” was being announced through the hospital’s PA system, I knew something was terribly wrong. The anesthetist increased the epidural and I had an ‘emergency’ cesarean. I gave birth to twin boys (Twin A Matthew and Twin B Steven) but Matthew was in critical condition. He was pale, not breathing, had no movements and no responsiveness. Matthew did not survive and passed away that same afternoon. Vasa previa is a devastating condition that is not well known but is more common than people think. The fetal blood vessels travel for some distance freely and unsupported through the membranes instead of within the umbilical cord. When contractions begin, the fragile vessels that cross the birth canal rupture, nearly always causing the infant to bleed to death. Vasa previa is a rare condition (1 in every 2,500 pregnancies) but it can be diagnosed before labor as early as into the 16th week of pregnancy. The technology to detect vasa previa exists but is not often used (a transvaginal color Doppler). When diagnosed, a woman will have a scheduled cesarean and the infant survives almost 100% of the time. Creating awareness and funding for vasa previa prevention is very important to me.

I also want women to understand the risk factors so that they can be spared the pain that our family has gone through. Some of the risk factors include: a low-lying placenta, placenta previa, multiple pregnancies, in-vitro fertilization pregnancies, a history of uterine surgery, painless bleeding or a D&C. A D&C is considered a risk factor as this procedure has the potential to cause uterine scarring. Anything that can cause uterine scarring can potentially cause a low-lying placenta which is the main risk factor for vasa previa as velamentous cord insertion and multi-lobed placentas are thought to develop as a low-lying placenta moves up. Also, from what I have read, the risk factors for vasa previa increases with every pregnancy due to the wear and tear on the uterus. The more damage done on the uterus, the harder it is for the placenta to implant on areas of the uterus that have a better blo od supply. The reduction in the fetal mortality from this condition depends on prenatal diagnosis; this is the key to a baby’s survival. When vasa previa is found before labor, the baby has a 100% chance of surviving. Sophie’s Walk (in memory of Victoria Goldstein’s daughter who died to vasa previa in 2001) will took place through The International Vasa Previa Foundation this year in 50 cities throughout the world. I also held the walk for vasa previa this year on Sunday October 1, 2006 in my community.

I live in Ontario, Canada and I have been in contact with many doctors in the Obstetrics community and also with The Society of Obstetricians and Gynaecologists of Canada (SOGC) trying to make positive changes for future-moms-to-be to set a standard of care for women with the risk factors mentioned above. The response I have encountered over time is that some agree that changes should take place and unfortunately others believe that it is simply trying to reinvent the wheel. I know better than this and truly hope that one day every baby will be saved from this kind of tragedy. My family and friends have been a great support. Also attending bereavement meetings and joining The International Vasa Previa Foundation has been very beneficial to me. If I can save at least one baby from this silent killer, then I am glad I can be the voice. We are so incredibly happy and blessed to have Matthew’s twin, Steven, in our lives but his brother’s death has certainly been the worse thing imaginable. There is nothing more horrible in life than losing a child.

Time does help heal but you never forget. Losing a son and enterning motherhood for the first time instantaneously was incredibly more difficult than people could ever imagine. There I was learning to breastfeed and waking up every 3 hours to feed my son Steven while we were planning the burial for our other baby boy. Sometimes I can’t believe that I survived it all! We have also been recently blessed again with a daughter, Erica, who was born on August 21, 2006 . During this recent pregnancy, I went to a high risk doctor who was aware of the vasa previa condition and checked for it during my pregnancy and thank goodness this anomaly was not present. However, I chose to have an elective cesarean and thank God everything went well, although upon delivering her, my husband Dominic and I were overwhelmed with emotions.

Please help me raise awareness of this devastating condition called vasa previa as it kills 95% of afflicted babies when not diagnosed prenatally. 95% of babies diagnosed prenatally survive and are perfectly healthy. As mentioned, diagnosis is made through transvaginal color Doppler ultrasound, but since it is not yet standard of care to look for vasa previa, otherwise healthy babies die unnecessarily. Being a member of the International Vasa Previa Foundation and we are on a mission to raise awareness so nobody else has to live through losing a child to this condition.

If you would like to know more about vasa previa you may visit the website I have created in tribute to my son Matthew at: www.ourangelmatthew.com or you can also visit The International Vasa Previa Foundation’s official site at: www.ivpf.org I would really love to have a chance to share my story with your readers and listerners. Thank you for your time and for listening to my story.

Sincerely, Claudia DiVirgilio

Comments

7 Responses to “Claudia’s ‘Vasa Previa’ Story”
  1. sophie says:

    hi claudia, its sophie we spoke on the vasa previa website. what a fantastic tribute to matthew! i thinks its fantastic that you are trying to help. i also think it is a tribute to my son dylan who as you know died to undiagnosed vasa previa. you owe yourself a medal sophie x x x x x x

  2. Cindy Paris says:

    Oh Claudia, this touched my heart! You are a very special lady. Matthew’s death is not in vain. The awareness you are raising WILL make a difference. And he’ll be there to help every step of the way.

    Your Companion in Distress,
    Cindy

  3. Jennifer Munson, Mom to Colton, vp miracle says:

    Congratulations Claudia on a job well done. You gave great information. Matthew would be sooo proud of all you are doing in his name! Big Hugs, Jen

  4. Gloria Horsley says:

    Dear Claudia,
    Thanks for sharing your story. Heidi and I were very touched by the loss of Matthew. We are also impressed with your strength and efforts to inform others about the risks of Vasa Preva. Keep up the good work and take care of yourself. Gloria

  5. Dear Claudia,
    I was recently diagnosed with Vasa Previa in my 21st week. Thanks so much for sharing because I was very scared. With prayer and people like you I have faith that my delivery will be a success. Thank you!

  6. Dave says:

    My wife and I were blessed with a baby boy just one short week ago. The road to get here has been tumoltuous at best. About 4 years ago we began to try to have a baby. We found out after about a year that we we woul dhave to take the route of IVF. Well that not being hard enought to go through we ended up doing it 3 times. The third time was actuallay a charm for us. We found out after a few weeks that we finally had a positive preganancy test. Needless to say we were both cautuoiusly happy about the news since we had been through hard times in the past. Fast forward to June 2 2008. My wife started bleeding very heavy and we called the doctor who then told us to go to the hospital. We were inthe hospital for about 3 hours while they preformed tons of tests. It seems that us being 1st time parents we might get an awkward look when we tried to explain how much blood my wife was passing. almost to say that we were just nervous 1st timers. Needless to say we were told to go home that night and that everything was fine and it was probably just old blood. Well 2 days later on June 4th my wife began to have another episiode of bleeding but this time it was even more. Our first thought in the back of our minds was that they said this was normall. We both could not accept this and we got up and left for the hospital. This was the best decision of my entire life. About 1hr into ther hospial visit our baby started having problems. His heart rate was racing in the 180-190 range then down to 60-70. We were notified that we would have an emergency c section withtin the hour.

    Upon delivery we could tell that something was not right. Our baby was breathing but had absolutely no muscle tone (compleltely limp) and pale as a ghost. They rushed him to the NICU and we awaitied news. It He was extrememly Anemic and that was due to his loss of blood. His little body actually sacrificed organs such as the bowel, Kidneys, and muscles to keep his little heart pumping and his brain with blood flow. He has been in the NICU for a week now and we are happy to report that his Kidney function with the help of medicines is returning. He has lost so much fluid that was being stored in his body because of his failing kidneys and he is looking great. We are hopefull that he will begin to eat soon and we can show him the home that Mommy & Daddy have been waiting to make complete for years. He is truly our inspiration and we could not begin to imagine what a will to live this little guy has. It makes everything else in life seem simple.

    Please ask your doctors for any information on this condition VASA PREVIA. Unfortunately not many people know about it and it does not get diagnosed. Our prayers go out to every one who has been through this horrible ordeal.

    Hope to hear from anyone with questions

    Dave

  7. Sarah says:

    Thank you for everything you are doing to raise awareness Claudia. Our son was born and died two years ago due to undiagnosed vasa praevia. Today i am almost 27 weeks pregnant and we got the all clear with a transvaginal colour doppler ultrasound. It’s just unfair that we had to loose our son to learn how to check for this condition, and even then it was ME who had to do the research… i am certain that i wouldn’t have got a TV scan from the NHS otherwise.

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