Chapter 12 – Organizing the IVPF

As sad as his loss was, we could all feel Nathan with us constantly, almost like he never left. It helped us learn to live with his loss. I still didn’t understand exactly how this could have occurred. So during all our grief, and all my walking, I delved into learning what vasa previa was. A neighbor who was an ultrasound technician brought me her text books and did an internet search on the subject. At my 3 week post operative visit with the surgeon who delivered Nate I learned that he had taken slides of my placenta and had been giving lectures on my case story. I vividly remember as my mother put me into the car after that doctor visit a voice from above telling me that my life has just changed forever and from that moment on would never be the same. I had not a clue as to what was meant by this. At the time I was upset with the surgeon’s inability to answer all my questions. The next day I took the photos of my placenta that he offered and went straight to the local medical schools with my list of medical articles.

At that time there were only 6 published articles on vasa previa and I had to visit both medical libraries in town to obtain copies of all of them. I was dismayed to learn that it was known for some 30 years that velamentous cord insertion could be prenatally diagnosed. Doctors didn’t know this. It was only standard of care to check the cord insertion at the baby’s belly button. But there it was, documented in a medical article from the 1960’s way before color Doppler, 3D and 4D technology, and computers. I continued to read and discovered that vasa previa could be diagnosed and survived. All the other articles were case histories on survivals. The one thing they had in common – prenatal diagnosis. These mothers were diagnosed by accident while their doctors were following up some other complication. They all suggested that transvaginal color Doppler ultrasound could be used to diagnose and save these children. I went back to my neighbor’s ultrasound text books. Yep, there it was – one paragraph on vasa previa. It essentially said that these babies die, nothing more. We’d fallen through the cracks.

Initially it was a comfort to believe what my doctors had told me: that velamentous cord insertion was very rare, and that vasa previa was even more rare; that it was incompatible with life; and that it could never, ever happen to me again. What I was learning on my from their own materials was not the same thing. Velamentous cord insertion is not at all uncommon. It occurs once or twice in every 100 pregnancies. It just doesn’t usually cross the cervix and is therefore little to no risk to most infants who have it. Vasa previa (and velamentous cord insertion) is caused by a low-lying placenta, hence to me this meant that whatever caused the low-lying placenta could cause another one, and potentially another vasa previa. Incompatible with life? Well, here were case histories on people whose babies survived vasa previa even though it has a 50-100% infant death rate depending on who you quote. One thing I did know was that nobody I talked to, in the medical profession or otherwise, knew anything at all about vasa previa. Doctors and nurses that I knew asked me what it was. Besides the surgeon who delivered Nate, the only other person that had heard of it was the midwife I originally wanted to deliver him and couldn’t because Missouri law had outlawed midwives during my 8th month of pregnancy. Oh yes, she knew about it. It was on the list of things that could go wrong during a delivery. Why didn’t anybody else know this? The information is there. But nobody was looking. So I started doing web searches for people who had experienced it.

Now the internet was pretty new back then. For several years there was nothing out there on vasa previa except those first 6 medical articles listed in the Pub Med. Most people weren’t on email yet, except maybe at work. Then suddenly, about 4 years after Nathan died, there was something. A lady in the Netherlands had just lost her baby to vasa previa and started an email list. I was the 8th subscriber. There were new subscribers every week.

Well meaning people often came up to me saying that they’d lost a child (or two!) and that they knew just how I felt. Ever since Nathan was born it seemed like infant death surrounded us. It was a well kept secret until then. It was coming out of the woodwork. But these people hadn’t lost a baby like I did. They’d miscarried. I had miscarried before too. As heinous as that was, it wasn’t anything the same as losing Nate. Bereavement groups and friends kept sending me books and materials on infant loss, but they were invariably about miscarriage or abortion and simply didn’t apply to us. Finding Marlou’s email group was like manna from heaven. Grieving is definitely a process, but grieving for a child is never ending. You spend the rest of your life healing. A child is forever. It never goes away. Knowing someone who’s lost a child during pregnancy doesn’t help much, no matter how devastated they were. Knowing someone who lost a full term child helps a lot more. They understand what you are going through. And for someone who’s lost a child to vasa previa, speaking with someone who’s experienced the same unexpected horror is like speaking with your soul mate. This email group grew fast.

It wasn’t long after I found the email group that a writer subscribed. Cara had heard about vasa previa somehow and wanted to incorporate vasa previa as a subplot in her next book. One of the next subscribers was another bereaved mom and her sister-in-law, Amy. Cara, Amy, Marlou, and another subscriber decided to organize a foundation to raise awareness and conduct research on vasa previa. Every week there were online meetings and chat sessions. Cara and Amy developed a press kit. The organization had a name: The International Vasa Previa Foundation (IVPF). A subscriber from England procured a donation for web space and through the hard work of Marlou and Phil we were suddenly online. Nine months after I subscribed to the email list I was asked to help officially organize the IVPF and be its Secretary. Another subscriber was a corporate lawyer and guided us through the process of incorporation. By December of 2001 I finally received papers from the Illinois Secretary of State stating that we were officially a 501(c)(3) nonprofit, charitable organization. The next step was to file for tax-exempt status with the Internal Revenue Service. We went to the email list subscribers asking for donations to cover the $500 IRS filing fee. It took a year, with the limited number of subscribers we had at that time, but after many, many hours of wading through that application, Amy was finally able to send it off.

That first year we mostly gathered information to share with the lucky few people who were being diagnosed by then, and provided a support outlet for the bereaved. The email list had the same effect for these new subscribers that it had for me. The saddest thing was the deaths. The vast majority of vasa previa babies were still dying. A radiologist contacted by one of our members developed the trophotropism theory which describes how a low-lying placenta moves away from the cervical area and sometimes leaves velamentous vessels in its wake. We took questions from our subscribers, went to doctors for answers, and put this information on our website.