OUR BIRTH STORY: IN HONOUR OF PREGNANCY AND INFANT LOSS AWARENESS DAY
Today is Pregnancy and Infant Loss Awareness Day and this is the first year that the International day is being formally recognized in Ontario and so I thought I would take the time to share our birth story. It’s different, it’s raw, it’s not for everyone but it’s our story.
More and more, people seem to be sharing their birth stories. From people in the spotlight like Jillian Harris, to the randoms on my pregnancy app – it doesn’t matter - there seems to be an appetite to hear the details of how little babes arrive into the world.
Today is Pregnancy and Infant Loss Awareness Day and this is the first year that the International day is being formally recognized in Ontario and so I thought I would take the time to share our birth story. It’s different, it’s raw, it’s not for everyone but it’s our story and it’s a similar story to many others and probably a similar story to someone else somewhere in your network that you may or may not even be aware of. Lastly, it’s an important story to tell because pregnancy and infant loss effects roughly 37,000 in Ontario alone each year and their stories are rarely told.
Last July we found out we were expecting our first baby. It happened easily enough for us and we were over the moon happy.
Everything progressed fairly normally – we entered the second trimester, posted our adorable little ‘our family is growing’ post on social media and prepared for our 20 week ultrasound which, for me, was really just about finding out the gender.
We booked a little ‘babymoon’ in Niagara-on-the-Lake and our plan was to open the envelope that held our baby’s gender while we were there. The day we were planning to leave, I had an appointment with our OB. I told my husband he didn’t need to come because even though we had our ultrasound, the results wouldn’t be in. It was supposed to be one of those easy-peasy visits where you weigh yourself, pee in a cup, talk about how you’re feeling and then listen to the baby’s heartbeat.
It was supposed to be easy-peasy but this appointment was anything but and started the chain reaction that would change our lives forever. The OB entered the room and had a file in her hand which she clearly hadn’t opened until she sat down in front of me. It was our ultrasound results. She scanned the document and I watched the life drain from her face. I’ll never forget the words that came out of her mouth “Your baby has a diaphragmatic hernia (CDH), you need to be referred to London, I can’t help you, is there anyone we can call?” I sat there stunned because I didn’t understand an effing word she had just said but then I repeated ‘is there anyone we can call?’ in my head and realized that was my cue to completely fall apart.
We still went on our babymoon but delayed departing by a day. We opened our envelope while at home that night and cried bittersweet tears over the fact that we were having a girl. We spent the next 24-48 hours researching CDH and realizing that it wasn’t a death sentence and that many babies survive and live very normal lives. We filled ourselves with hope and positivity in preparation for the tests that were to come.
From there everything got exponentially worse. After visits to the Fetal Development Clinic at the hospital in London, it was confirmed that our baby not only had and extremely severe case of CDH, but she also had several structures of her heart missing and the diagnosis was 100% fatal and inoperable. A group of doctors gathered with us to share this information and share our options (none of which resulted in a positive outcome). Lose the baby now 'naturally', lose the baby now surgically, lose the baby in 4 months (if she made it full-term).
Shortly after, we made the decision to induce and go through with labour. I’d say it was the hardest decision of our lives but it wasn’t that hard. My husband and I were on the same page throughout this part of the process and for that I can’t be more grateful. It was the easiest, worst decision of our lives.
On December 7, after 21 hours of labour, we met our daughter Everly Grace and said hello for the first and last time. She was stillborn and tiny and we held her for close to eight hours (something I was not expecting to do for so long), played music, read to her and then said goodbye.
After we were discharged, we made our way to the funeral home to take care everything we needed to do there. At a certain point in a pregnancy, you go from having a miscarriage to either having a stillbirth or a live birth, followed by a death and both require you to make formal arrangements for either a burial or cremation.
Arriving home that evening was the most bizarre moment of my life. We had just gone through labour and held our baby and yet just a few short hours later, we were eating take-out and watching Netflix but in a state of absolute shock. Everything had changed but it felt like nothing had changed. I proceeded to go through all the things that happen to your body after you give birth (and I’ll spare you the details) and then day-by-day, we started to heal.
I cannot articulate how difficult this experience was for both of us and I am so extremely grateful for not only the love and support we received from friends and family, but also the resources that were available to us. I hadn’t thought about the latter much until I read this article the other night and realized just how lucky we were.
From the moment things started to go sideways, we were put in touch with the best possible resources. We had first class care from everyone at London Health Centre and the Fetal Development Clinic, I had at-home visits from a midwife, I was able to take two months off of work without any financial worries (and it could have been more if I hadn’t been ready to go back), I was able to see a therapist who specialized in perinatal loss, I was able minimize the amount of time I spent in a dark, dark mental hole because of the abundance of resources available to me but I know that this is not the norm.
Many families aren’t this lucky. Maybe it’s because they don’t have access to benefits or maybe it’s because they delivered a stillborn baby in a hospital that just wasn’t experienced or equipped to deal with this outcome. Either way, the idea that anyone has to go home and get through something like this without any help makes me incredibly sad and I was so happy to hear that funding has recently been allocated to an Ontario network (PAIL) that provides group and personal counselling to families as well as training to hospital and healthcare staff.
When you go through a pregnancy or infant loss, you become part of a club. It’s a really shitty club. A club that scars you forever and taints any future pregnancy you might have. Your eyes become open to just how common loss is and how many people there are just like you. Nobody chooses to be part of this club but I’m extremely encouraged that this club of ours is starting to get more and more exposure, awareness and most importantly, funding.
I’ll close with a message to anyone who is currently going through a loss – know that you are not alone, know that it does get easier, know that if and when you get pregnant again it will be scary and you won’t feel at ease until you have a healthy baby in your arms, you will have moments of complete panic and anxiety but you will also find beautiful moments in your pregnancy. Lastly, don’t be afraid to talk about what you’re going through and seek support in whatever form it needs to come in.
If you made it to the end of this – you’re awesome. Thank you for taking the time to read our story.