When Oka was born, she was whisked away to the nursery then a level three facility to assess whether she could It has been the great privilege of my life to be able to support families through this very difficult progression. I consider myself an intermediary on the healing plane, helping people on one hand to understand the process and then to help them find a spiritual strength which they can use to negotiate the difficult and ongoing process.
Time does not always lessen grief and death is not the end. Perinatal loss covers a very extensive spectrum of events and emotions which impact, women, families and future generations.
Listening to others over the years has helped to pave the way for me to talk specifically about Perinatal loss. A road map of emotion can help many to understand the complex pathways by which loss renders us incapable of moving forward and yet gives us incredible strength when we know that in time, we can develop the ability to cope with its paralyzing effects.
My career as a nurse started out with the idea that I would always want to work with women and children. This idea came to me at age 7 along with the thought that breastfeeding would be a huge part of my life. I had no idea how big it would be or what it would teach me.
I knew that I needed to have my own family first before I was involved in maternal nursing, simply because I wanted nothing to mar or influence my own experience. In hindsight, that was very naive of me. Once I was past that step of early childrearing, I applied for my first job working as a RN in the post partum unit at a hospital in downtown Toronto. This was back in 1980. It was a good decision on my part.
My story will end there because from that point on, I realized that learning had only just begun for me. Everything I thought I knew about life was just on the surface. 50% of my patients, newborns, were unable to communicate with me. Babies had no words to describe their needs. It was easy to see when they were content. We all believed that sleep was a sure indicator of normalcy in an infant but that wasn’t true at all. I also learned that women carried so much of their hopes and dreams into this child. What did the child carry into life? Who would advocate for them at their highest and lowest ebb?
A gift of awareness made this an easy knowledge base for me, but for many women the road from conception to birth was fraught with events which could have the greatest impact on their ability to conceive, support a healthy pregnancy, give birth, breastfeed, and raise a fit, well adjusted child.
There wouldn’t be enough time to talk about all the issues which could impact this dynamic. Keep in mind Dr. Pask’s words as I share with you a story about a client of mine and her family. This newborn infant, drew me into her life at birth and changed everything for me and for her parents before she passed from this world secure in the knowledge that whatever potential had been hers to take, she had fulfilled its promise.
If having a baby was as simple as having sex and getting pregnant when you wanted to, all the arguments for and against abortion, adoption, invitro, wouldn’t exist. Women would simply choose a time for conception and have a baby, but that doesn’t always happen. To Oka’s mother, an early pregnancy loss impacted her sense of self. One in four pregnancies ends in abortion or miscarriage. The words are the same, one term is medical, the other is a lay term and each is modified by the circumstances of the loss.
When she conceived a second time, the unexpressed loss of self esteem for failure to carry her first pregnancy was a nagging concern. Her second pregnancy was uneventful, and lasted well beyond the troubling 12 week marker. No reason to suspect any problems. This was the time before extensive ultrasounds. No one had any reason to suspect an abnormality until the birth.
Death is not always the end, nor does it mark the end. We can have death in the midst of life. Giving birth to a child with multiple abnormalities is death to the hopes and dreams we weave throughout our pregnancy. It is a time when we suffer shock, fear, guilt, anger in the face of a living nightmare. Nothing can prepare families for this experience and I can tell you, that even today when we can suspect things are not going well, the immediate shock of the birth is not lessened by pre knowledge. It is impossible to imagine less than perfection.
Even in stillbirth, it takes hours for women to accept that their baby has not drawn a breath. In years gone by those infants would be taken away. Mothers would sit and wait and wait hoping someone would come and say their baby is alive and well. Now we know that women must sit with their newborn waiting and watching for the breath that would signify life. It would take hours sometimes. You can always see that moment of recognition. survive. Her mother, recovering from an emergency caesarean birth, also considered a loss, was alone, confused, frightened, waiting.
So even in life, we have death and separation.
When I met Oka’s parents, they were in a state of shock. They had not seen the infant. Neither could they even fathom the consequences of her disabilities, nor coming to terms with her physical appearance. If you asked, in that day after Oka’s birth, if death would have been preferable, you might have been right but in hind sight, we see that this child lived to change many lives, including mine.
If a child dies, there is a clear path to all kinds of support from family and friends, organizations and groups for bereaved families are welcoming, churches help and guide. Suppose your baby doesn’t die but you are told to anticipate that death will be inevitable. There exists a whole different set of circumstances. We are not prepared for those twilight moments which exists between birth and immediate death.
Oka was sent back to our community hospital without an IV. She looked like a little warrior. Both sides of her head were shaved giving her the appearance of a faux hawk. The look coincided with the group of First Nation people at Oka, Quebec who were fighting for their rights. I gave her the nickname because she became a little warrior for life. The fact that she had been returned, meant that her multiple abnormalities were incompatible with life and she would die. In total, an expected life span of 6-8 weeks for her type of genetic mosaic abnormality was the norm. She would be in my care until that time, likely days not weeks.
How could these parents, simple minded folk, raised outside of any metropolitan area even in their developing nation, new immigrants to Canada and unable to understand the complex issues which create life, how could they possibly find hope?
Oka’s parents, needed grieving time. They needed to stop blaming the different religions, the dysfunctional family dynamics, the previous miscarriage. This was where I was able to help. Change the focus from one of profound loss to one of loving for this precious child whose time may be limited. Let her leave the world surrounded by love. Those words became the mantra! We were able to find a way to help these parents and their family support system to not only stay by their daughter’s side, but also learn to insert and feed her through a tube, take her home, give her two more sisters and become passionate advocates for children born with Trisomy deformities. As a family, they went on to survive three surgeries to repair a horrendous bilateral cleft lip and palate, gastric surgery to insert a feeding tube and heart surgery to close a hole and repair a valve.
In the community we were able to help establish access to physio, social work, equipment, couples counselling and religious support in another faith to remove the stigma of a mixed interfaith marriage. There was a whole team of people in the medical field who continued to support these parents as they took on the challenging task of caring for Oka at home. Did all these things help? On the surface we would all say yes, but when Oka’s mother became pregnant for the second time, she went the full nine months in a state of shock. (manifested as withdrawal) When I brought her entirely normal looking baby to her, neither she nor her husband could look at the child, and refused initially to accept that she was their own. She failed to bond with her second child until months later. It wasn’t until the pregnancy of her third child, when she came to me, in her sixth month that I fully realize that grief does not go away just because time has passed. Sheela had amniocentesis and ultrasounds which were all reassuring but still, she was in tears, body shaking, on the verge of hysteria, fearful of the possibility of having another child like Oka. She said, ‘Judith, I can’t do this again.’ I understood in that moment the profound impact of grief including my own. Fortunately, all turned out well but it was years before the sharp edges of the traumatic birth were eased.
When Oka was born, she was given 6-8 weeks to live. If I had said to her mother, don’t worry about this child. Despite her many complications, she will live a long happy life. She will change you and your entire family. She will help you build confidence and become a better parent. You will find friends and groups and organizations which will support you. Your husband will find his own strength, and build a house for his family and your children will become advocates for the plight of others and know that their older sister defied the odds. Everyone Oka touches will fall in love with her and she will become the best advocate for what love really means. If I had said those words on that first day, Oka’s mother would not have believed me. At that time, it would have been false and unrealistic hope. The family needed to live only one day at a time, some days one hour at a time grieving even as they tried to rebuild their life. If I told her all those things she would have hated me. But, against all odds, those things happened exactly as I described because she was loved.
Note: This story of love was one of the driving forces behind my second book, Suspect, Love. It is dedicated, in part, to the memory of this delightful girl and her amazing family.
More to come in part three