Today, we are honoured to have a guest post from another grief blogger. Sarah Cox, of Journey for Jasmine, has shared how she has grown through her grief of losing her daughter to a late pregnancy loss to helping others.
Let’s listen to her story.
Warning: this post contains potentially upsetting content dealing with CDH, mosaic trisomy 15, and infant death.
There are days that will change your life forever. March 11, 2018, was one of those days. This was the day we lost our second child, Jasmine Grace. She was stillborn when I was 32 weeks pregnant. This is how I recovered from a late term pregnancy loss.
At 13 weeks, she was diagnosed with CDH and then later, mosaic trisomy 15
We knew this was a possibility, as Jasmine had been diagnosed with CDH (congenital diaphragmatic hernia) at 13 weeks. This meant she had a hole in her diaphragm, which allowed some of her organs to move up into her chest cavity and compress the lungs. CDH, while it was a very serious condition, could be survivable by itself. We later learned she also had mosaic trisomy 15, which is extremely rare.
I researched online after the diagnosis and found there was less than 50 known cases of children having mosaic trisomy 15. I had never even heard of either CDH or mosaic trisomy 15 before we received the diagnosis.
It seemed like with each appointment, we would get more bad news. I never gave up on her and tried to channel as much positive energy her way as I could. For a few weeks, everything seemed to hold steady and she seemed to be doing as well as could be expected.
One morning, I woke up and realized she was not moving as much as she usually was. I went to my appointment that day and was told she had developed hydrops, which is fluid in her organ and tissues.
We were told we could choose to induce and deliver now in order to spend a few minutes with her, or we could wait and increase the chances she would be stillborn. I frantically searched for someone who could help us, but we lost her a few days later.
Delivering My Stillborn Daughter
I thought my world was over when I had to deliver her.
When it was time to push, I remember telling my husband that I did not want to do this. I felt I was not strong enough to do it knowing what awaited me. The silence was deafening and I desperately wished that there was some mistake and we would hear her first cry.
We held her, took pictures, and spent time with her as long as we could. We had to leave her there at the hospital and go home without her. I will never forget the nurse who gently took her from me and promised to hold her until the funeral home came to take her.
I remember going home with my husband and asking him if we could just watch something funny on TV. I know it sounds strange, but I needed to laugh and needed to do something “normal”. We watched America’s Funniest Home Videos and I remember how good it felt to laugh, but also feeling guilty that I was having a moment away from my grief.
One of my favorite things I was told at the hospital was that whatever I was feeling at the time was the right way to be feeling. There is no right or wrong way to feel when you are in the midst of grief. I could go from crying uncontrollably at one moment to being extremely angry the next. Our son had been staying with my dad while I was in the hospital. I both wanted my son home with us and wanted to be alone in my grief.
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Grieving After Pregnancy Loss
I went back to work a week after we lost her. To some, including my boss at the time, this seemed too soon. To me, I needed to feel “normal” again. I am not one of those people who can sit around and be sad all the time and needed the distraction.
Even though I was trying to keep myself busy, I still thought of her every day and still cried most days. There were so many reminders of being pregnant with her at work and at home. My body still showed the marks of being pregnant and my milk still came in.
I had to deal with the postpartum issues without having a baby to make the issues worth dealing with.
Our son was almost 4 at the time and we tried to explain to him what had happened to his sister. It was not until a couple of years later that he started to talk about it and truly understand it. We chose not to bring him to the hospital when she was born. Sometimes I regret this decision, but he was so young and we made the best decision we could at the time. He has expressed that he wished he could have been there. At the time, he did not fully understand what had happened.
Grief Support System
After my pregnancy loss, I was fortunate to have a large support system of family and friends. I did withdraw from people for a while and came back when I was ready. I was part of a birth month group of other women who were all due the same month as me. They had been very supportive through everything and continued to be after our loss.
I could not even go back to that group for several months as everyone else had their babies. The group was a constant reminder that Jasmine was no longer here and I could not look at other babies.
There were several CDH groups I had joined while I was pregnant with Jasmine. Generally, the CDH community is very supportive to people who have recently been diagnosed and for those who are looking for treatment options.
I had to leave all those groups after my loss. Although my daughter did have CDH, I felt like an outsider because it was ultimately the mosaic trisomy 15 that took her. People came to the groups for hope and positive stories after receiving the CDH diagnosis. My daughter was one of the ones who did not make it and no one in the groups wanted to hear the loss stories. The people I thought were my friends in those groups disappeared and I did not hear from a lot of them after that.
Finding the Positive After Pregnancy Loss
A few months later, I decided that I wanted to do something that would help others who had dealt with a loss like I had. A friend of mine reached out about Stillbirthday, which had a bereavement Doula training program. I joined the program and started learning how to help others who were facing a loss. This led me to getting involved with an organization called Pregnancy After Loss Support. I wrote for their blog about my loss and the pregnancy after my loss. I loved reading the comments about how my writing was helping others who had dealt with loss or a pregnancy after a loss.
Just a couple of months ago, I also started a project to help bring awareness to pregnancy loss and infant loss. It involves sending out a rainbow skirt I wore for my maternity pics with my rainbow baby. Other women who have experienced pregnancy loss or infant loss can use it for pictures. Then, I post the pictures and stories.
It provides an outlet for women to tell their stories and helps raise awareness to an issue most people are uncomfortable talking about.
Related Post: How To Turn Loss Into Strength
I Didn't Let Pregnancy Loss Define Me
The loss of Jasmine could have broken me if I let it, but I chose to let it define me in a different way. I chose to try to make the best of a terrible situation and use it to do something good for other people experiencing pregnancy loss or infant loss.
My husband and I chose to grieve together and not let it break our relationship. We all grieve in different ways, but I believe we get to choose to not let that grief consume us.
My journey has not been easy and I still have bad days. The sadness will hit me out of nowhere and is sometimes so strong it takes my breath away.
The jealousy sometimes takes over when I see families who have three healthy children and do not know the pain of the loss I have felt. I would never wish the pain on anyone.
I also know that I want to make my daughter proud and make sure that everyone remembers her name and her presence. She was here for a short amount of time, but her legacy will always live on through me.