October is widely recognized as Pregnancy Loss and Infant Death Awareness Month, a time when many individuals formally acknowledge babies in their families who have passed on too early, whether in the womb or shortly after birth. Many people take this opportunity to not only remember the bittersweet memories that were left behind, but also to get a little closer to that special baby who didn’t have the chance of experiencing life for very long.
I’m Crystal Northcott, regional program consultant with the Children and Women’s Health Program of Eastern Health, and through my heartbreaking experience, I want to bring awareness to pregnancy loss.
My husband and I have three children – our son, Caleb and two daughters, Winter and Mya. Caleb was born on January 19, 2010. While we neither got to know our son, nor had the opportunity to create a lifetime of memories together, he left a lasting impact on our lives and will continue living in our hearts. This is how Caleb’s story goes.
From excitement to heartache
January 4, 2010 was going to be an exciting day for us. This was the day my husband and I were going to see our first baby via a routine ultrasound!
We expected a good report from our doctor. I was a healthy 26-year-old woman who didn’t smoke; I took my prenatal vitamins, followed a healthy diet and I exercised safely and regularly. Up to this point in my pregnancy, everything went as well as it could, and my risk of miscarriage was low. But, I couldn’t have been more wrong.
When the report came back, the ultrasound showed that our baby had Bilateral Renal Agenesis, which meant that his kidneys did not develop. A baby’s kidneys begin to form very early in a woman’s pregnancy, and for Caleb, this meant that there was no chance of his kidneys ever forming.
As soon as we received the news, my mind started searching for solutions. I wondered if there was any possibility of being placed on the transplant list. I also wondered if dialysis could be an option until a kidney would later become available. With all the medical technology and advancements that are available today, my husband and I hoped that there was something that could be done to help our little boy.
Unfortunately, we received more bad news. We learned that our baby’s condition was not compatible with life, and that a kidney, as small as what Caleb needed, would not become available through organ donation. With no kidneys present, Caleb wasn’t surrounded by much amniotic fluid as it’s produced by kidneys, and in turn, his lungs would not develop since the amniotic fluid assists in the development of a baby’s lungs.
My husband and I were stunned. Caleb was a baby who had a heartbeat; I felt him moving and kicking. It was hard to believe what was happening to our family. None of this seemed real.
Heart wrenching decisions
Following a Magnetic Resonance Imaging (MRI) exam to confirm the ultrasound findings, we had some tough decisions to make. Our options were either to terminate the pregnancy, or see it through until the end. Either way, the outcome was going to be the same – Caleb would not live longer than only a few hours after his birth.
I couldn’t handle continuing the pregnancy knowing that our baby would die shortly after birth; I chose to terminate the pregnancy early. My husband supported the decision, but words cannot describe how awful I felt.
Our health-care providers assured and reassured us on several occasions that there was nothing that we could have done differently to have prevented Caleb’s condition. However, I couldn’t help but feel that I made a mistake somewhere along the way.
Two weeks later, I was induced. I was devastated and scared to know that I had to endure labour and not have a beautiful, healthy baby at the end. My labour lasted for 27 hours, yet the hardest part for me was when Caleb finally arrived. My body felt a sense of relief after the labouring process, and that made me feel guilty. I recall my husband sobbing when he relayed the news to our parents over the phone – “it’s over, we had a boy,” he cried.
Making a difference
Our experience presented us with so many sad memories, but I do recall some wonderful people along my journey – staff who expressed compassion and kindness at times when I needed it the most.
Upon my admission to hospital, I recall that a registered nurse hugged me and told me that this was the most difficult decision I would ever have to make in my life. For the first time, I felt that someone else knew how devastated I was and how conflicted I felt.
Another registered nurse left a lasting impression on us – she took care of me right after Caleb was born. She cleaned him up after birth, dressed him and sat with us while we held him close. I remember that I felt empty and sad. This nurse cried with us and shared the story of her own heartbreak. Her kindness meant so much to me, and her personal experience validated all the emotions that I was feeling.
Reflecting on my experience, I wish I knew a lot more about pregnancy loss and what to expect physically and emotionally after the birthing process. For instance, since my pregnancy didn’t go to term, I didn’t know that I was going to produce milk to feed a baby that I didn’t have. That was a horrendous experience to endure, which made my grieving process more complex.
It wasn’t until I was discharged from hospital that I started feeling alone and isolated. I remember searching for support groups, but didn’t have much luck with finding any. Although I saw a psychologist every couple of weeks, I knew that I needed more help.
And then there were people’s reactions. I didn’t know how to respond when people asked me how my pregnancy was going, after we lost our baby. I also didn’t know what to say when people attempted to comfort me with words like “there’s always next time” or “you’re only young, you’ll have more.” I remember thinking that I didn’t want another baby, I wanted Caleb. I also felt hurt and angry when people told me that “everything happens for a reason.” I thought, “what possibly could have been the reason for this?”
And so, aside from availing of individual counselling services to help me through my grieving process, my search for more information began with the Internet and books.
Helping others: new research, education and resources
I wanted to do something to help others who found themselves in our shoes. My grief-stricken experience has led me to conduct research on pregnancy loss – I completed my Master’s thesis on the differences in grief and coping between men and women after pregnancy loss. Through my research, I found that although men and women experience the same levels of grief immediately after the loss, how they cope is very different from each other. Women tend to seek help and want to talk to others about their experience, whereas men generally keep busy as a distraction from their grief. As such, there shouldn’t be a “one size fits all” approach to caring for and supporting individuals who have suffered a pregnancy loss.
In 2014, a group of colleagues and I received a grant to provide health-care professionals with education from the Pregnancy and Infant Loss Network (PAIL) on pregnancy loss and bereavement. I believe that this opportunity became the catalyst for standardizing processes; providing more education to health-care professionals about available resources regarding pregnancy loss; and sharing resources across the health-care system for the greater benefit of patients and their families.
Eastern Health has since developed a range of patient education materials to ensure that parents and their families have access to reliable information about available services and resources. For example, Navigating Perinatal Bereavement is a video series designed to provide quality bereavement and support services to women, couples and their families – regardless of geographic location, availability of suitable counsellors, or time of day.
Another resource that remains close to my heart is with regards to baby burial and funeral planning. After Caleb’s birth, we were given the option of having the hospital make arrangements for his remains, or we could choose to make the arrangements ourselves. We chose to have the arrangements made on our behalf because we didn’t know where to start or how much a funeral would cost. My biggest regret is not taking the initiative to make our own arrangements for Caleb, or at least inquire on how to proceed about doing so. It bothered me for a long time that I didn’t know what happened to his remains or that we didn’t have a special place to go to feel a little closer to him. It’s because of these emotions and afterthoughts that I created Perinatal Loss – Funeral Planning, an Eastern Health pamphlet so that families would have the information to make informed decisions about their loved one’s final arrangements.
Many other resources like outpatient grief counselling are available to individuals or couples through Eastern Health’s Pastoral Care and Bereavement services, as well through the Women’s Health psychologist. The Janeway Resource Centre also offers books and DVDs on loan, pamphlets and access to other helpful websites on the topics of women’s health and wellness; and perinatal grief and loss.
It’s important to recognize and acknowledge the grief individuals experience with pregnancy loss. Every person’s grieving process is unique, and some may require more supports than others. If you’ve suffered a loss like I have, please know that you are not alone. ■
This story was written by Crystal Northcott, regional program consultant with Eastern Health’s Children and Women’s Health program.