Grief | Grieving | Death of a Child

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