My husband and I found out about vasa previa on the Internet. We had never heard of it before. Vasa previa is rare condition, one in every 2,500. If it goes undetected, it has a high fetal mortality of 50% to 90% because of the hemorrhage that occurs when the vessels are torn when the membranes rupture, either at labour or delivery. When this happens, such as in Matthew's case, the baby looses blood and oxygen. There are two types of vasa previa: multi-lobed placenta and velamentous insertion of the umbilical cord. Velamentous cord insertion is fairly common in pregnancies (1-2:100 pregnancies), which can lead to vasa previa. Sometimes there is confusion thinking that vasa previa and velamentous insertion of the umbilical cord are one and the same. Although velmentous cord insertion is much more common than vasa previa and women should take extra caution and concern, it is not the same as vasa previa. Most cases of velamentous cord insertion are successful whereas vasa previa are not unless it has been prenatally diagnosed and managed adequately. I also found that many people, including nurses, thought that vasa previa was placenta previa. The terms might sound similar but they are not the same. When a woman bleeds because of placenta previa, the blood is maternal. When a woman bleeds because of vasa previa, the blood is not maternal, it is all fetal blood loss.

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 blood 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. Vasa previa can be detected during pregnancy as early as the 16th week. It can be seen with the help of a trained technician and the use of transvaginal sonography. However, strongly suggest to your doctor to send you to a location, such as a hospital, where they can combine the use of a color Doppler as this increases the chances of detecting it immensely. Unfortunately for me and for other mothers who have lost their babies to this condition, some doctors do not even bother looking at the cord insertion and therefore do not perform these simple but invaluable tests.

Suggested management for women with vasa previa includes hospitalization in the third trimester and delivery by c-section at 35 weeks. I believe doctors do not want to pass the 35 week period because then there is a greater chance of the membranes rupturing on their own. Babies might be born prematurely but it is still safer than waiting and a possible rupture.

Vasa = vessel
Previa = crossing the cervix

Normally blood vessels feeding the baby will travel from the placenta through the umbilical cord and into the baby's bellybutton. Vasa previa can develop when velamentous insertion of the cord exists. The umbilical cord inserts at a distance from the placenta, and its blood vessels travel relatively unprotected in the fetal membranes, crossing the cervix, to reach the placenta. Hence, the fetus has exposed blood vessels that run right across the opening of the cervix. Such as in Matthew's case, a baby will hemorrage and loose oxygen to the brain, sometimes in a matter of minutes. The doctor who performed the emergency c-section said that when he initially had examined me he saw about 100 cc of blood loss (which was Matthew's blood). Below you can see a link from an Internet site that demonstrates how disasterous vasa previa can be. However, the information is only provided in French.

http://www.aly-abbara.com/livre_gyn_obs/images/gif/vasa_praevia/vasa_praevia_cordon_velamenteux.html

 

Many parents, like myself, who have loss a child to vp, have undiagnosed vp miracles or were diagnosed during pregnancy with vp are part of a group called the International Vasa Previa Foundation (www.ivpf.org). Its headquarters are in the USA but members are from around the world. We are trying to set standards of care on trying to detect vasa previa during pregnancy, specifically around the gestation period during the Level I and Level II ultrasound scans. Efforts have been especially strong in the UK, USA and Canada. Another goal is to have a set standard of care for vasa previa throughout the obstetric community. With the help of the IVPF, more and more Obstetricians are recognizing the severity of this condition. However others, such as my former OB/GYN, still have a lot to learn. The American College of Obstetricians and Gynecologists has information published on vasa previa and I'm hoping that through my letters and support, the Society of Obstetricians and Gynaecologists of Canada will also recognize this anomaly and hopefully set a standard of care. Also, with the continuous efforts of the IVPF some ultrasound organizations now have guidelines to include scanning the placental cord connection during routine obstetrical ultrasound. It should be recommended guidelines for all women with risk factors. As a result, more women are being prenatally diagnosed these days, especially in the United States.

To conclude, I want to do what I can to remember Matthew in a positive way. One way I have found is by joining the support group for mothers like me with the International Vasa Previa Foundation. It has been helping me as we all give each other support. I understand that many people who have not experienced the loss of a child do not understand the true depth of the pain it causes. That is why the IVPF has helped me to talk to other bereaved parents who understand. I have also attended several meetings with PBSO, an organization for bereavered parents in Ontario. I urge others who have experienced a loss to find a support group as it does make a difference (see section under Links).

Another positive way to remember Matthew is by informing people and creating awareness of this devastating condition. I know many people are aware of this anomaly now through my efforts with dedicating this website and creating the YouTube video clip. I also held a walk in his memory (Sophie's Walk) in October 2006. As well, I have sent many letters to the doctors and the SOGC trying to work with them, although it has not been an easy task to say the least. I do not feel that the onus should be on pregnant women but I encourage women to be their own advocates. So please, pass this information on to others. I am not doing this to shock or frighten moms-to-be but instead I want them to be informed and aware. Ask your doctor if he/she knows about vasa previa. If you have had one of the risk factors mentioned above, ask to have extra testing. In fact, you should not only ask but demand it! It is your body and your baby's life! One last advice I can tell you is that if you're not happy with your doctor, leave! Get a second or even third opinion. It might be time consuming and inconvenient but in the end it might make all the difference in the world.

I promised Matthew that I would do whatever I can to raise awareness about this 'silent killer' so that other families will not go through the tragedy that our family has gone through. Fatal outcomes due to vasa previa can be prevented.

"Above all we must realize that each of us makes a difference with our life. Each of us impacts the world around us every single day. We have a choice to use the gift of our life to make the world a better place - or not to bother."

Jane Goodall