In the days and weeks that followed, we did what we could to get through the Christmas holidays. We tried to go to family gatherings. We tried to be festive for Josh’s sake. Leaving the house to go Christmas shopping was unbearable. It was as if every woman in the Greater Hamilton Area was suddenly pregnant. So many, who seemed to be succeeding where I had failed.
I didn’t go to work for about two months.
We arranged for Seamus’ cremation and picked up his ashes. No service. No ceremony. I avoided people as much as possible.
I dyed my hair black and pierced my nose – which turned out to be a great idea. It gave people something to focus on and talk about, rather than the fact that I was without a belly or a baby.
My Dad flew in from California to spend time with me. That meant a lot.
I watched Lost. A lot.
I experienced phantom baby kicks, which I knew was just the fluttering caused by my uterus returning to normal size.
I talked to the grief counsellor a couple of times on the phone. She tried to encourage us to attend a support group. But I couldn’t picture it.
“Hi my name is Heather and my baby was born without the lower one-third of his face and I have no idea why.”
Steve was all the support that I wanted at the time. And he did a great job of it. I’m sure there were moments when he wished he could jump up and down, wave his arms around and remind me, remind our family and friends that this had happened to him too. I know that when I sat out on the porch at night, alone, trying to talk myself through it, I only ever asked, “Why me? Of all the people on the earth, why me? What did I do to deserve this?” It was all about me. It was all about what I had done. And I wanted to know what I had done.
This is where Dr. Khan came in. Dr. Khan was, and still is, Assistant Professor of Medical Genetics and Pediatrics at the Alberta Children’s Hospital, University of Calgary. During my first appointment with him, he explained that he wanted to conduct some special testing of tissue that had been collected during Seamus’ autopsy. He wanted to send samples to Baylor College of Medicine in Houston, Texas for a chromosomal microarray. My amniocentesis had shown no chromosomal abnormalities, and the microarray would take it a step further by testing for submicroscopic abnormalities that were too small to be detected through conventional means.
He also asked me to go home and try to recollect everything that I had done in the weeks leading up to finding out that I was pregnant and what I might have done, or used or consumed early in the pregnancy. He explained that whatever caused the interruption in Seamus’ development occurred between Carnegie stages 10 and 11 of embryonic development. In other words, it happened around 28-30 days into the pregnancy.
Before I left, Dr. Khan gave me a copy of the autopsy report. I had to find somewhere to sit down and read it. I expected the findings to be limited to his heart conditions and the structural abnormalities of his face. But the list of findings was long, and included brain abnormalities and blindness. I thought about his beautiful blue eyes and my heart ached. My entire being ached.
But I did what I was told. I went home and thought about everything I had done in the month before discovering that I was pregnant. I thought about going to California with Josh, my sister and my niece. I thought about riding roller coasters and consuming a few alcoholic beverages. I hadn’t taken any medications, and I didn’t recall any illness.
But then, something came to me. I called Dr. Khan immediately. I told him about a spot concealer and foundation that I had used for years. Every day. Sometimes, several times a day, per the instructions. I told him that at around eight weeks into the pregnancy, I just happened to read the packaging for the concealer and noticed that it listed salicylic acid (1%) as a medicinal ingredient. I had never even thought about it as a medication. I knew there was salicylic acid in it and I knew it kept my face from breaking out. But I didn’t need a prescription to get it. It was just there on the shelf, along with all the other Almay products. I stopped using it immediately. Just to be on the safe side.
About a month after this phone call to Dr. Khan, I went to see him again. He told me that the microarray had come back normal as well. No genetic abnormalities. He went on to explain just how rare my son’s condition was. The research he had done indicated that nothing had been reported that was identical to my situation, but there were a handful of reports that were similar. A handful of similar reported cases. Throughout the world. This was the lottery I had won.
He further explained that it was possible that Seamus’ condition wasn’t all that rare. Perhaps, what made it so rare was that I didn’t miscarry early on, as one would expect with such a major malformation. He told me he wanted to further research a possible connection between my son’s condition and my use of topical salicylic acid.
A few years later, Dr. Khan and his research colleagues would publish an article in a medical journal on Clinical Dysmorphology. The article is titled “Agnathia-otocephly complex in a fetus with maternal use of topical 1% salicylate.” And it is all about Seamus.
And this is the crux of why I needed to tell my story. And why I shouldn’t have waited this long. Of course, the connection between salicylic acid and agnathia-otocephaly complex couldn’t be concluded with medical certainty in my case. But it’s out there as a possibility. And now, it’s not just out there for the medical community to ponder. It is there for you to ponder. My story isn’t intended to scare or cause alarm. It is only intended to encourage women who are trying to become pregnant to think about what they are applying to their bodies, on a daily basis, in the name of vanity.
That sounded judgmental. I realize that. But understand that it’s coming from someone who – no matter how inadvertent – potentially contributed to the death of her baby. I’m not an expert on maternal fetal medicine (although, I could probably play one on television with some credibility). I’m just someone who hopes to spare even one person from going through what I went through, no matter how remote the possibility.
Beauty products are changing every day. The market is constantly flooded with “new advances” and high-tech ingredients that promise glowing skin and eternal youth. But when it comes to pregnancy, weigh the pros and cons. Err on the side of caution. Don’t ever have to wonder what you may have sacrificed.
Chapter 10 – To conclude…
I want to make sure you understand how important this story could be. Setting aside the cautionary aspect of it, there is more to this.
This is a story that helps to underscore the importance of a woman’s right to choose what happens to her body, and in cases like this, to her mind. Imagine if I didn’t have that right. After losing Seamus, I spent months in a BabyCenter chat room with many women in my position. Women who had been through it and women who were going through it. And we kept our stories within the confines of that chat room, hidden behind our usernames, and we supported each other. Because we were too ashamed to talk about it openly. Because no one else could possibly understand. There, I met a woman who chose to terminate because her baby had anencephaly, which meant the baby was missing major portions of the brain and skull. Always fatal. This happened to her twice. Imagine if she didn’t have the right to choose.
So, what I have to say next might surprise you.
Despite everything you and I have just been through together, and everything I went through in December 2005, I wouldn’t change it. I know now that it had to happen.
Clearly, there have been drawbacks. In addition to the emotional trauma, or perhaps because of it, I occasionally have trouble with empathy. For example, if someone is telling me a story about something horrible that happened to them, and that thing doesn’t rate very high on my scale of what counts as horrible, I tend to glaze over. Play tiny violins in my mind.
Also, subsequent pregnancies were extremely difficult for me. (And for everyone around me.) But I needed to fill the void that Seamus had left, as soon as humanly possible. By the time his actual due date came around, I was pregnant with Callum. Dr. Brennan agreed to be my obstetrician and made the mistake of giving me her email address so that I could contact her with any questions, at any time. By the 36th week of the pregnancy, I was begging her to induce me. Callum and I had come that far and he was still alive, and I needed him to be with me. And finally, at around 39 weeks, she gave in…when I started having panic attacks…even in my sleep. Callum is nine now and I can’t imagine my life without him.
And now for the cheesy part. The part where I tell you what I learned.
I learned that worrying about everything won’t stop bad things from happening (but I still worry…all the time). I learned that I am not immune to the worst-case scenario. And I learned that I can get through the worst-case scenario. Of course, it changed me. Actually, it transformed me. In a way that would not have otherwise been possible.
I cannot wish it never happened. Because that would be to wish away everything that I am and everything that I have now. And I earned this shit.