Since avoiding the train wasn’t an option, we decided to board on the far east side of the track, rather than our regular west end car. While waiting for the train, I recognized three people and my heart nearly jumped out of my chest. They recognized me too, because they made obviously glances to my belly. I stood next to a man on the train who takes the 5:33 all stops train to Pickering every night. He nodded a familiar hello to me signaling he recognized me, but didn’t speak. I don’t know him, but we often sat in the same seat area on the train and on one occasion when I sat across from him he commented that the carrots I was eating was a healthy snack for the baby. As that thought entered my mind, my eyes quickly began to well up with tears and I turned my back to him.

After departing the train at Union station my husband I made our way to the subways. As the subway approached my husband walked closer to the “yellow line” in an effort to get near the doors and get a seat. I stood far back and cowered near the wall suddenly feeling an intense fear of someone pushing me or losing my balance and falling onto the tracks of the oncoming train. Mark signaled for me to follow him, but I couldn’t. I was frozen with fear. I feel that way a lot now. I fear that something terrible is going to happen to Mark or myself. I waited until the subway came to a complete stop before stepping away from the wall.

The subway ride was uneventful, but I was growing more and more anxious at the thought of being surrounded by pregnant bellies in the next few minutes. Surprisingly, I walked into the office building, eyes forward, and made a beeline right to the reception desk. I asked them if they had a room I could wait in because I was here to discuss a neonatal death and did not want to sit amongst pregnant woman.

They quickly found a room for my husband and me to wait in. They left my medical records on the table and I quickly snatched them and began reading. Inside was the preliminary autopsy results, the pathology report on my placenta and the internal audit report. My husband and I started scanning the documents. A lot of the words didn’t make any sense (medical terminology), but it was easy to get the gist of what it read. Nothing seemed to state a cause of death however. A nurse came in to see us. Seeing us reading my medical charts she tactfully pulled them away and asked how we were doing. I knew she didn’t want us reading the reports until the doctor had a chance to review them.

The nurse performed all the standard checks on me. She poked and prodded, checked my wound from the incision of the c-section, blood pressure and a bunch of boring stuff that I couldn’t have cared less about because I was anxious to get to the details of the reports.

My OB’s name is Dr. Maxwell. She arrived in the waiting room and before getting down to business (which I was fully prepared to do) she surprised me by asking how we were doing. She wanted to hear how Mark and I were coping and navigating through everything. I suppose I shouldn’t have been surprised at her compassion, she did, after all, come to visit us in the hospital after Ava passed away and shed many tears with us.

I was just so raring to go and get to the facts, I forgot about the human side that doctors have too.

We learned that the official autopsy results were not complete yet. We had a preliminary report, but they were still searching for answers.

The results obtained from my placenta were unremarkable. Normal normal normal.

We reviewed the internal audit for timing. I was relieved that everything documented was exactly as I had remembered. I carried a Mount Sinai hospital card that had to be swiped everywhere I went, so I guess it would have been hard to alter the facts, but I was expecting them to be different, if nothing than to shorten the timing on everything to make the hospital look good. There was none of that. All the timings jived with our cell phone records and memories exactly.

Finally, we discussed the results of the autopsy. Be warned. If you are faint at heart this is not the section to read. I know I had to remove myself from all motherly attachment for a few moments to be able to listen to what I was about to hear. I will try and explain this gently.

The full report is not in yet because not all the testing has been completed. The preliminary results posed more questions for the medical staff. The results of her autopsy were as follows:

The provisional pathological diagnosis:
38 week gestation female(neonatal death)
· Hypertolerism
· Skin tag anterior right ear
· Some excess nuchal skin
· Meconium staining of the skin
· Heart (Prominent endocardial blood vessels region of limbus of foramen ovale, SVC opening, AV node area)


In reference to the heart, in a nutshell, as the doctor explained, the theory to date is thus:

The “pacemaker” of Ava’s heart had a small structural abnormality. This sort of abnormality is nothing that one would normally concern themselves with, but that, combined with precipitous labour, caused Ava to become very distressed.

Distressed babies, although not uncommon, can usually handle the journey down the birth canal, and the squeezing and squishing of a contraction. Going from womb to real world is a stressful event for any baby, but normally, babies cope just fine. The theory is that the stress of such an intensely fast labour combined with the weakness in the pacemaker of her heart was just too much for her to handle. Becoming distressed, she passed meconium (or her anal muscles loosened and she had a bowel movement). All of these factors on their own don’t usually become too much of an issue. Combine them all together, and it’s just too much for a baby to cope with. Therefore, her poor little heart couldn’t handle contractions with the intensity and ferocity of my quick labour. She became distressed…very distressed and couldn’t cope.

I asked how come this sort of thing wasn’t picked up at any of my weekly ultrasounds or the ECHO that was completed back in February. The doctor explained that an ultrasound cannot see tissue and cell structure. This was not something they could have detected or have known about.

That is the theory for now. Ava’s heart has been sent to the The Hospital for Sick Children to be examined further by their experts to dig deeper for answers. For those who aren’t familiar with “Sick Kids”, this is where my ECHO was performed back in February on Ava’s heart. It is also one of the largest paediatric academic health science centres in the world. The hospital has an international reputation for excellence in health care and research. Although I would have requested a second opinion from the results provided by Mount Sinai, I would feel absurd seeking a second opinion from the results that come back from Sick Kids. The best of the best work here. There aren’t many other places in Canada that compare. I am happy this is where they are doing their research.

The skin tag on the ear is actually quite endearing. Mark was also born with a “spock” ear (as in Spock from star treck). No one else in the Cadeau family has ever exhibited this bizarre ear characteristic, only Mark and Ava, which makes it quite special and endearing. He remembers holding her for the first time thinking that she too would have to have her ear operated on like him to remove the excess skin, then realizing she wouldn’t live long enough to ever get teased about it.

When discussion started to focus on the Hypertolerism and excess nuchal skin, our overly sensitive minds were put to the ultimate test. Both of these characteristics are associated with genetic disorders, or Downs Syndrome.

The doctor tried to make it clear that she didn’t believe this was in any way what caused Ava to die, but I’m sure you can imagine that Mark and I were severely devastated. I remembered back when all the genetic testing was offered to me and I refused them. I refused them because for one, I didn’t believe there was any risk of genetic abnormalities because there was no history of it in either of our families, and second, no matter what the outcome, I would never EVER terminate a pregnancy based on that, and didn’t want to know my 16 week old baby’s genetic make up. It didn’t matter to me then.

So why did it matter to me now?

We asked the doctor if they had any blood tests to determine if there was a genetic abnormality, but apparently that isn’t a standard procedure. We authorized an autopsy, and genetic testing was something altogether different. I’m sure the doctor could sense we were about to fly through the roof with concern.

Excess Nuchal skin (skin on the back of the neck) has been linked to babies who are born with Downs Syndrome. In fact, they are now starting to perform ultrasounds that measure the “Nuchal Translucency” of the back of babies necks to check for such a thing. I was panicking. The doctor seemed to think the extra skin was simply due to edema in the baby, but of course, Mark and I were in a tizzy trying to fathom what we were being told.

Hypertolerims is a term that refers to an abnormally large spacing between the eyes, with a wider spacing indicating a genetic problem.

We requested genetic testing be performed as soon as possible. The doctor suggested that Mark and I be tested as well for our genetic makeup. She ordered Karyotype tests to rule out chromosomal problems.

This was the ultimate blow. All we wanted was an answer to why our baby had to die, and now we may have been part of the problem. Our DNA wasn’t compatible. I know I would love my baby no matter what, but how do you even begin to comprehend that your DNA, the genetic make up of who you are and the person you love, isn’t compatible for child bearing? How can a couple who so intensely want to have children survive that?

We finished up with the doctor and she handed us our blue forms to complete the blood work. She told us that we were the strongest couple she has ever seen and she was amazed at how we handled everything with so much grace. She is a high risk doctor, and I know she has seen her fair share of unfortunate outcomes. I really want to believe she meant that. I shared with her some photos of Ava before we left. It just didn’t feel right leaving on a note of medical theories and big medical words. This visit was about Ava afterall, a little baby girl that meant the world to my husband and me. I wanted to end it on a humanistic and compassionate note. Dr. Maxwell began to cry.

We bid our goodbyes and took our little blue forms (they may as well have plastered genetic defect on my forehead at that point), and went and took a number for our blood tests. I was pretty much numb and full of hate and despair at that point. Nothing could have prepared me for this. I wanted to just crawl in a hole and die.

We sat silently with our numbers for a little while before I turned to Mark and told him I didn’t want to be there. I didn’t want to suffer through this because no matter what, I still wanted more children and I still wouldn’t have an amniocentisis or Chorionic Villus Sampling done on any future pregnancies. The risks were too great, and I would love my children no matter what!

We walked out of the building, blue forms left behind in the trash, heads hanging lower than they have ever hung. Conversation wasn’t flowing easily. I don’t think either of us knew what to think.

Mark walked me to Union station and sat with me while we waited for a train before he returned to work. A little bird flew up to us as Mark was eating his banana muffin. She looked at us with the most intense curiosity and hopped around so close to our feet. Mark broke off a few crumbs of his muffin and fed them to her. She happily gobbled them up. I started to think about the muffin he held in his hand. Since I’ve been off work I try and make sure we have a bountiful supply of banana muffins because they are Mark’s favorite, especially when he can smell them baking when he arrives home from work. I thought of being at home with Ava and baking muffins together because the smell of fresh muffins made daddy happy and a tear trickled down my cheek.

I caught the train home and Mark went back to work. The rest of the afternoon was tough. So much to think about and so few answers were available. All we had to go on were theories and now, the curveball discovery of possible chromosome problems linked to Ava’s death. Life felt so unfair. I don’t think I can even find words to describe what a blow this news was for us.

At 5:30 my cell phone rang. The call display indicated it was the hospital calling. It was my OB, Dr. Maxwell. She had the results of the genetic testing on Ava already. I held my breath.

“Everything is absolutely normal!”

I breathed the biggest sigh of relief. I questioned her about the Hypertolerism and excess nuchal skin? She explained that some babies are on the extremes of “normal” and Ava just happens to fall on that side of the extreme (and what a beautiful extreme she is). I thanked her for following up with me so quickly. I wasn’t expecting such a quick response, but I think she saw how worked up Mark and I got about the possibility of a genetic problem and got the answers for us right away.

It’s funny how a piece of news like that can totally alter your mood. I think I was happier than I have ever been for the past seven weeks. Even though we still didn’t have any definitive answers, the fact that genetics were ruled out was hands down the best news they could have told me. Elated, I called Mark on his cell phone to tell him the good news.

What an emotionally draining day that was. I’m very anxious to learn the results of the research at Sick Kids, but it can take another 3 – 4 months. For now, I am satisfied that they have a theory at least, and although there are many factors involved that all had to come together to cause such a traumatic event to occur, I can live with that. At least they just didn’t say “sometimes these things happen”.

Labels: Grief and Loss, In Memory of Ava, Thinking Out Loud