As we prepare to write this story on the 7 month anniversary of both the happiest and saddest days of our life we realize that our story has just begun. Research and education done since our daughter’s tragic death has revealed a troubling climate on both the global and Canadian medical scenes.

The condition of “Vasa Previa” has robbed us of our little Katarina; our daughter whose arrival we awaited with such anticipation always wondering what her purpose in this world will be. How would she contribute to our society? We now know that a 30 second scan preformed during our regularly scheduled ultrasound would have diagnosed this condition and given our care providers the opportunity to save her via a scheduled cesarean section.

Daily as we wake to start a new day we are faced with a moment of truth where we realize that “no, we are not dreaming, we are actually awake and healthy, full term babies are still dying every day because those in charge of their well being have become complacent.”

The Beginning…

A few months following our wedding we decided we were ready to responsibly welcome a new person into this world and decided to start trying. Katarina was conceived in love within the first week of our decision to start. What we did not know was that Katarina from her early conception was working against the odds. As my placenta developed a portion of the umbilical cord blood vessels responsible for carrying life sustaining blood to Katarina became exposed (i.e.. not inserted into the center of the placenta) but were attached to the membranes for a few centimeters before reaching my placenta.

The Pregnancy…

Aside from some initial morning sickness my pregnancy was uneventful. I worked hard to ensure my nutritional and exercise requirements were exceeded. I especially enjoyed walking and swimming on a regular basis.

Mike had attended all obstetric and ultrasound appointments. He still remembers during the first appointment wondering whether he should wait outside or accompany me into the doctor’s office. No one said he wasn’t allowed to come in so when they called my name he was right behind me.

From then on it was routine and even though my appointments were at all times of the day he always took time off work and made sure he was there. He did not miss a single appointment. During the first ultrasound he tried the same approach but was quickly informed by the ultrasound technician that he needs to wait outside until all measurements are complete at which time he would have a chance to meet the baby for the first time.

On our wedding day Mike’s best mans speech included a reference to how they came to give him the nickname “Google” as Mike always knew something about everything and in case he did not know today he would go home research it and know tomorrow. With our pregnancy it was no different. Mike spent endless hours reading about the pregnancy process and had a thousand questions for the technician one of which was regarding the placenta and wanting to have a look at it. The technician was very helpful and answered a few of the questions during the limited time we had. He had informed us that everything looks good but that our obstetrician would have the official results.

Throughout the pregnancy I received three ultrasounds all of which did not show anything out of the ordinary. The last ultrasound included a group of standardized tests including the umbilical blood flow measurements. My score perfect on these 8 tests. With less than 8 weeks to go all indications were that my delivery would be routine (whatever that meant to the obstetrician) and on schedule for July 12, 2006.

We attended prenatal care and breastfeeding classes and tried to gather as much information as possible on caring for this new baby after her arrival. We researched non-toxic alternatives to use around the house and cotton diaper options. Sometime during the last four weeks Mike remarked that he felt he knew enough to deliver the baby on his own if he had to. He said I had nothing to worry about.

Monday, July 10, 2006

An uneventful day with some regular ice cream cravings. Before going to bed I remarked that the baby was moving around a lot. Mike did not say much but later I found out he thought to himself that this could be it. Tonight could be a long night. Unfortunately that was the longest night of our lives.

Tuesday, July 11, 2006

At 1:10AM I felt a warm gush and woke Mike. He immediately jumped out of bed and put the light on. My water had broken and he knew what to do. However I quickly noticed large quantities of blood that accompanied the water. Was this normal? There was nothing similar to what Mike and I had read about. Mike immediately called 911 and was informed that only small quantities of blood are normal. Mike informed me that we are going to the hospital. I put on a pair of adult diapers and we were off.

As we live less than 1KM from the hospital we were in the emergency area at 1:20AM. As I was wearing a pair of adult diapers no bleeding was apparent. We calmly informed the “Triage” nurse about the large quantities of bleeding and were directed to the birthing department. We were registered at a different hospital, one closer to our obstetrician, and were therefore unfamiliar with the layout of this hospital.

Upon arrival to the birthing department we calmly informed the nurses of the situation making sure we accurately described my symptoms and were told to wait. We knew that hysterical and panic type behavior does not help the situation. A minute later another nurse approached asking us whether we were registered here. We indicated that we were not at which time she proceeded to hand us a bunch of forms to fill out.

At this time Mike’s patience had ran out and he had calmly but sternly refused any of this nonsense and requested that they immediately examine me at which time the nurses realized that this is not a joke. In hindsight we wish we were panicked as it may have saved these 2 minutes wasted by the nurses’ complacency. I’m sure parents come in overreacting all the time so they assumed that nothing much was wrong based on our behavior.

Nurses were unable to locate the heartbeat on the fetal monitor and had called in the on-duty obstetrician who coincidentally was the chief obstetrician for the hospital. He had informed us that there was no heartbeat at which point Mike asked what he was waiting for? “Waiting for what, this baby is dead”. “It can’t be…”  Mike said “…we felt the baby move on the way here a few minutes ago we must do a cesarean section now!" In Mikes mind he should have rushed me into the operating room and attempted to resuscitate the baby. Mike has extensive first aid and CPR training and knows that even without air there is still some time. The doctor on the other had refused. He said the risk of the cesarean section must be justified; there must be a heartbeat before he will take the risk. Another 30 seconds passed while they both looked at the ultrasound screen. “There, did you see that, the baby moved! We must save this baby.” The doctor replied, “OK, we’ll do the operation.” As we write this we wonder whether this discrepancy between Mike’s expectations and the doctors was because the doctor knew that it would take approximately 30 minutes to get an anesthetist. So much for an emergency c-section.

They wheeled me away to the operating room while Mike was informed that I would not receive anesthesia until they could establish my medical coverage. Again, a possible attempt to distract him as they knew the anesthetist was 30 minutes away. In all the rush I had forgotten my health card. Mike had to go 3 floors down and get me admitted before anything would be done. In his head the clock was ticking as our daughter’s life was slipping away while he fought the bureaucracy. If he could only get the paperwork done maybe Katarina could be delivered in a few more minutes. He ran flustered to the admitting office and then watched the hospital staff member “hunt-and-peck” the keyboard as he typed Amanda’s information in, misspelling her name, backspacing and retrying. The time had slowed down to a crawl. At least 10 more minutes had passed since Amanda was wheeled into the operating room and her card was just ready. No matter how hard he tried to get Katarina out of there to give her the help she needed all these roadblocks were popping up.

During these 10 minutes the doctor kept on looking for the heartbeat on the ultrasound monitor with no signs. The anesthetist arrived about 20 minutes after I entered the operating room. Mike was allowed in shortly after with the doctor informing him that there ware no signs of life and that Katarina would be brain damaged even if she could be revived. Mike said that he did not believe him and wanted to be sure for himself. They spent another 5 minutes looking at the monitor with no results.

I was returned to the birthing suite where I spent the next 5 hours delivering Katarina. As I prepared for the final push Mike and I recall a sense of happiness. We where finally going to meet this baby we talked to and poked all throughout the pregnancy. Shortly after Katrina’s delivery my placenta was delivered and even though Mike was paying attention to Katarina he took a close look at the placenta. By this time a number of extra nurses were in the room all of whom wanted to see the placenta. They pointed out to each other certain features such as the exposed blood vessels which allowed Mike to take note as well.

The delivering doctor, a different one from the original doctor, came back and mentioned that this very closely resembled a condition she had come across earlier. The condition was called “Vasa Previa”. We would get the official results in a few months but at least in the meantime we could research the details on Vasa Previa.

The Aftermath…

Mike did what he does best and researched Vasa Previa. The first place he came across was the website http://IVPF.org. The website belonging to the International Vasa Previa Foundation was setup by parents just like us. The ones that found out afterwards how trivially diagnosable it really is. The more we read the sadder we got. A number of photos of Vasa Previa placenta were available online and they showed a number of similarities with what Mike saw the day before during Katrina’s delivery. As he got into the treatment research we could not believe to find out that this condition was diagnosable. “All my ultrasounds were perfect. Why did they not see anything?” It can be diagnosed via “Color Doppler” ultrasound but all the ultrasound photos we saw were in black and white. Was Canada not advanced enough, are color Doppler machines unavailable here? As we would later find out there is not one ultrasound place we are aware of that DID NOT have the color Doppler capabilities. To top it all off technicians regularly use the color Doppler but are not requested to check for Vasa Previa.

Three months had passed while we waited for the official results. Finally the results are in we can’t wait to talk to the doctor. He would explain everything to us, we were told that terrible day. We patiently sat down and waited while he reviewed the results. “There was an infection…” he said. “An infection!?” Mike exclaimed, “…what kind of an infection”. “A bacterial infe... oh, there was NO INFECTION. I’m sorry I made a mistake reading. There was no infection.” At this time it was clear that this doctor did not take any time to prepare himself for this meeting. He glanced at the results, saw the word “INFECTION” and proceeded to give an explanation. It actually said that no infection was present. We were furious but remained calm.

We took charge of the discussion and asked about the umbilical cord findings. He indicated that the umbilical cord insertion was “marginal”. Marginal what does that mean? He could not explain. He also said that there were no signs of tearing prior to delivery. The bleeding began only after my water broke. He switched the conversation to moving on, thinking ahead….

We asked him what he knew about “Vasa Previa”. After he mumbled for a bit we proceeded to explain what little we knew. We told him that we understand that “Color Doppler” ultrasounds can be used to detect the condition. “Are these available in Canada?” Mike asked. Mike wanted to avoid having the doctor act defensively in fear of repercussions or assumption of blame so his questions were centered on the premise of our next baby. “Next time we are expecting can we get this scan? How hard is it to get?. Does it cost money?” Mike asked. The doctor replied, “…It is very easy. See this sheet I just have to write it on here and that’s it”. Our hearts sank. A couple of words on the requisition sheet could have saved our daughter.

Keeping in mind that he is the “Chief” obstetrician for this hospital Mike proceeded to ask him why these test aren’t regularly requested by obstetricians. The doctor’s answers shocked us further. “For the last 100 years the fetal mortality rate has always remained the same. Despite technological advances we are unable to make a drop in this rate. Sometimes we can improve one thing but something else always comes into it’s place. I estimate that before this year is over we will have one more case like yours. But we cannot save this baby”. “Why not? You can obviously scan for it.” Mike asked. “Well, because our cesarean section rate might go up. We might have to have 60 or 80 cesarean sections per 100 because of misdiagnosis. We can’t afford to have these misdiagnosed?” At this point it became clear that he was not aware of any details on Vasa Previa was mostly talking based on assumptions.

He glanced at his watch for the nth time. Mike said “before we go can we at least ask you to please do research on Vasa Previa and on how easily it is diagnosable.” “I will.” he said. Mike said “could you please write it down.” He wrote it onto a sticky note and placed in on his desk.

The Future…

After further unstructured interviews with related medical staff in our immediate vicinity, the greater Toronto area, we find a dangerous mix of misconceptions, assumptions and worst of all complacency. Doctors who loose babies regularly have become accustomed to it. A fact of life; it seems a certain percentage are meant to die and there is no use trying to change it. …And yet, globally thousands of concerned obstetricians praising the education work done by the International Vasa Previa Foundation (IVPF). The organization regularly attends medical conferences and has even received standing ovations at these conferences. The IVPF work is like a small ray of light growing brighter every day refusing to accept the status quo and actually making a difference.

Clearly those we interviewed do not represent the entire community as we have met numerous people who think a difference can be made. The increase in Vasa Previa miracle reports, the babies diagnosed and saved by their obstetricians is on the rise everywhere except for Canada. In the UK the protocol setting Royal College of Obstetricians and Gynecologist (RCOG) has indicated a review of their guidelines on Vasa Previa is necessary and has committed in doing so during October, 2008. The world is waking up but Canada is still behind. We now have a cause and are committed to making a difference. The scariest part is when we tell people, not about what happened to us, but about Vasa Previa. The disbelief in their face, resembles one that even I likely would have had, you can read it on their face; “it can’t be possible, we don’t live in a country where such neglect is taking place. Someone would have surely sued them by now. You must be leaving something out.”

These are the people who need our help. We now know and will request a Vasa Previa scan with our next pregnancy but our co-worker, our neighbor, our relative may not. The embarrassment and awkwardness of raising awareness amongst our peers is well worth the effort. I do not ever want to be in a situation where I am telling someone “oh, you lost a baby too, what do you know I must have forgotten to tell you. You know, I did not want to have and awkward moment so I figured its better to not say anything.”

Look for us on the street, the bus, the train, at work and in the mall and if you can spare some time join our effort as we will save a life.

Mike and Amanda Krznaric