Disclaimer: This story contains details of pregnancy loss which may be upsetting for some.
PCOS & Pregnancy
“I always had a gut feeling I would have trouble getting pregnant. I was not having regular cycles when I was a teenager, so I went to my OBGYN at the time. She diagnosed me with PCOS (polycystic ovarian syndrome), put me on birth control, and sent me on my way. I never really understood what having it meant except I did not have regular cycles. Nothing about my future fertility or trying to get pregnant was brought up. Nothing even about how to manage having the condition or what it meant for me in daily life. Honestly, I did not even ask. I was 16 at the time, and obviously not thinking about trying to get pregnant. I took the birth control and thought nothing of it.
I met my husband when I was 20 years old. We got married a few years later and wanted to start trying to start a family. I came off birth control and was not having periods. I eventually received a referral to a reproductive endocrinologist (RE), where my PCOS diagnosis was confirmed. I was not ovulating, so I had zero chances of getting pregnant. We went over our options and decided to try a medicated cycle of Clomid. I had also started acupuncture at the time, which really did amazing things for my cycles. It regulated them when I had never had regular cycles before!
I did not respond to the Clomid, so we moved on to Femara. I did respond this time, but it ended in a failed cycle. I got pregnant naturally on my own the cycle after and gave birth to a healthy baby boy.
Baby Loss
We decided to start trying for our second baby a couple of years later. I managed to get pregnant on my own, but it ended in an early loss known as a chemical pregnancy. I was devastated. We decided to do another round of treatment, this time having to add in injectable medications to help my body respond better. The first cycle failed, but the second cycle worked! I was so thrilled, but this one also ended in an early loss. One of the frustrating things about having PCOS is people trying to offer their helpful suggestions of ‘just relax,’ ‘go on vacation,’ or ‘have you tried this thing?’ I know they are trying to be helpful, but they do not understand PCOS causes irregular cycles and a hormone imbalance, along with many other issues. Relaxing does not fix these issues magically!
We had now had two losses, and I was so terrified of having another. I did not tell many people, just family and close friends, about our losses. It always feels like something you are not ‘supposed’ to talk about. Which makes no sense because it is something so many of us go through. Due to some issues with my HCG levels not coming down like they should, I had to have a shot of methotrexate. It is basically a dose of radiation that will get rid of anything remaining that would cause the HCG to not come down completely. This meant I had to wait 3 months before we could even think of trying again. After the waiting period, we had another failed cycle. I got pregnant on my own the cycle after the failed treatment. I was scared, but after we saw the heartbeat, which I never saw with the early losses, I felt hopeful. Unfortunately, at our 13-week scan, we were given the bad news our daughter had CDH (congenital diaphragmatic hernia). This meant she had a hole in her diaphragm, which allows the other organs to move up into the chest cavity. The lungs are then compressed, hindering their development.
We ended up meeting with a specialist and had a plan to relocate in order to get her the best treatment possible. Due to the CDH, she would require surgery very soon after birth. I was hopeful, and I knew she was strong and we could get through this. We decided to name her Jasmine Grace. Her first name came to me in a dream. The specialist requested we have an amnio done. The results of this showed she also had mosaic trisomy 15, an extremely rare condition that has only a handful of known cases in the world. Basically, doctors had no idea how this would affect her.
At 32 weeks, we discovered she had developed hydrops, and a few days later, we were given those horrible words that she no longer had a heartbeat. I then had to deliver her, knowing I would never see her open her eyes or hear her cry. I remember crying out to my husband when it was time to push that I could not do it. But I had no choice. I had to do it. We held her and had Now I Lay Me Down to Sleep come and take pictures. Then, the next day, we had to leave her behind and say goodbye. I will never forget the kindness of the nurses and staff at the hospital. They treated us and Jasmine with so much respect. There was even a nurse who volunteered to come in during loss situations. I remember their names and their faces. They truly made a difference during a horrible time in my life, and I can never thank them enough.
I was fortunate to have a ton of support from family and friends. Even with this, loss has a way of making you feel so alone sometimes. I knew then I wanted to do something to help other loss families. I started volunteering for a pregnancy after loss organization, and it felt good to be doing something ‘useful.’ I tried to return my life back to my new normal as quickly as possible. I just could not sit at home crying all day, every day.
Rainbow Baby & Anxiety
Six months after our loss, we did another round of fertility treatment and got pregnant with our rainbow baby daughter. I was terrified the entire pregnancy we would lose her just like we lost Jasmine. Thankfully, it was an uneventful pregnancy, and she was born happy and healthy. The moment she was placed on my chest, I felt immense relief and just cried. Then came the worries she would stop breathing in her sleep at night or something bad would happen to her. The anxiety was just heightened due to our losses. I still check on both of my living kids multiple times a night and probably over-worry about something bad happening to either of them. The loss trauma stays with you and is extremely hard to shake.
During the pregnancy with Jasmine, and with our rainbow daughter, I had started blogging and writing down everything as I went through it. I wrote about my rainbow pregnancy for Pregnancy After Loss Support. I found it comforting to write everything out and liked hearing the feedback that it helped others.
Project Finding Your Rainbow
I also had a rainbow skirt I wore during my rainbow baby maternity pictures. I started Project Finding Your Rainbow. The skirt travels from one loss family to the next. They take pictures with the skirt, and the pictures and stories are shared. This helps them heal by writing and sharing their stories, while also raising awareness for pregnancy and infant loss. There have been 160 stories published so far, and I hope to keep it going as long as there is interest. The feedback I have received from participants is incredible, and I hope to continue doing my small part to help other loss moms heal. Sharing our stories is hard, but healing. It helps the memories of our babies continue to live on.
I think people misunderstand that having a rainbow baby means you are completely healed. I now have had six pregnancies (I am currently pregnant with my pot of gold baby) and two living children. I am grateful every day to have them here with me. It does not mean I stop missing Jasmine or wishing she was here with us. Pregnancy after loss is the ultimate place where grief and joy co-exist. You are so grateful for the life you are creating, but grieving the one who could not stay. As a loss mom, there is always a piece of you missing. Your family will never be fully complete because one, or more, of your children is not here with you.
Now that I am pregnant again after having my rainbow baby, I have found the anxiety is still there. I still worry with every appointment she will not have a heartbeat anymore or they will find something wrong. I am writing this at a little over 16 weeks pregnant and so far, everything has looked good. Every test comes back normal, and the ultrasounds do not show anything wrong. But the fear is still always there. You never truly get over that fear and anxiety. We only learn to live with it and live with the grief. The grief never goes away, but it changes over time. Not every day is a bad day anymore. There are good days and bad days. I think about Jasmine every single day and miss her every single day. She will always be my first beautiful daughter.
We celebrate her heavenly birthday every year and include her as much as we can in the family. My living children know about their sister, and I try to tell her story whenever I can. If I even help just one person by sharing my story, then it has been worth it. It is not always easy to write, but I find it healing. I want her memory to stay alive, and everything I do for the loss community is in honor of her. In the loss community, there is a saying it is the worst community we never wanted to be a part of, but full of the absolute best people ever. I have met so many amazing women and heard them tell their stories. I cry reading every story shared through my project. I have been there, and I know the pain they have gone through. By sharing our stories, we are showing others how we continue to manage grief and heal over time.”
This story was submitted to Love What Matters by Sarah Cox of Atlanta, GA. You can follow her journey on Instagram, Facebook, and her website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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