‘I cried, ‘I can’t do this. I want to stop.’ I had to deliver my daughter knowing I’d never hear her cry.’: Woman delivers rainbow baby sister after losing daughter to Mosaic Trisomy 15

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Disclaimer: This story contains details and graphic images of child loss that may be upsetting to some.

“I always knew getting pregnant would be a struggle for me. I was diagnosed with Polycystic Cvarian Syndrome (PCOS) at the age of 16 and put on birth control. PCOS meant I did not have regular cycles or regularly ovulate on my own, meaning it would be difficult to get pregnant later. I did not think much about it at the time as I was not looking to have kids anytime soon.

I met my husband at the end of 2007 and we were married in 2011. I went off birth control and we started trying to have children. I was having no luck with my cycles, so I started acupuncture and began seeing a reproductive endocrinologist. We did the infertility testing followed by a first round of fertility treatment, which failed. However, the cycle after that, I was able to get pregnant without interventions.  The pregnancy was pretty event free and I gave birth to a healthy baby boy.

Courtesy of Sarah Cox
new born
Courtesy of Sarah Cox

A couple of years later, we decided to try for our second child. I got pregnant on my own a few months later, but this ended in a chemical pregnancy. This prompted us to decide to try another round of fertility treatment and I got pregnant again. When I went in for the ultrasound, they did not see a baby and I was told I was having a miscarriage. I was shattered again because now I had two losses in a row. We tried one more round of treatment a few months later, which was also unsuccessful. I got pregnant on my own again the cycle after this failed treatment.

This time, the pregnancy progressed and we heard that amazing little heartbeat. At our 13 week appointment, we were told that our baby had something called congenital diaphragmatic hernia (CDH).  This meant that she had a hole in her diaphragm, which allowed the other organs to move up into the chest cavity. This compressed her lungs, hindering their development. The doctor told us the prognosis for this diagnosis was not good. My husband had not been able to attend this appointment, so my mom had gone with me. We both left confused, heartbroken, and scared. Surely, the doctor made a mistake. We would go back to the next ultrasound just to be told that everything was fine, wouldn’t we? I had to break the news to my husband later. It was one of the hardest things I have ever had to tell him. He was also devastated. The doctor had written the sex down on a card and we opened it together. We were having a little girl. A little girl with a serious diagnosis.

I wanted to give our daughter, who we named Jasmine, every possible chance I could. I wanted to prove the doctors wrong. My daughter was a fighter and she would beat the odds. We eventually met with a specialist who felt she had a good chance of survival and we made plans to relocate to another state for her birth and treatment. Then, we were hit with another crushing blow when we found out she also had Mosaic Trisomy 15. A very rare condition that has less than 50 known cases worldwide. We had no idea how this would affect her, so I continued being hopeful and fighting for her. The specialist still agreed to try to treat her, though he said that this could possibly change her chances of survival.

Courtesy of Sarah Cox

My pregnancy progressed and she seemed to be growing and developing fine. Around the 32-week mark, I woke up one morning and noticed that she was not moving as much as she usually did. I had a doctor’s appointment that day. It was at that appointment that my husband and I learned Jasmine had developed hydrops. We were given two options by the doctor. Schedule an induction immediately and spend a few minutes with her or wait and every day the chances of her being stillborn would increase.  To say I was heartbroken again is a severe understatement. I cannot possibly describe how that moment felt. Sadness, disappointment, anger, grief, confusion, and still trying to be hopeful all rolled into one single moment. I still hoped for the best. Surely he was wrong. Jasmine would be okay, she would prove all the doctors wrong. In a panic, I called our specialist and had to leave a message. It took them three days to get back to me, only to let me know that there was nothing they could do for her. I felt completely abandoned and on my own. I desperately tried to find someone else, anyone else, who would be willing to give her a chance and try to help us.

A few days later, we went into the hospital for a movement check, as I still was not feeling much movement from her. I remember that day so clearly, as we had my son’s birthday party that morning. I was simultaneously trying to be excited and happy for him, while worrying about Jasmine. My mom and my husband came to the hospital with me for the movement check. As we were standing at the check in counter, my pulse was racing. I was standing still and my pulse was as if I was doing heavy exercise.  In that moment, I knew she was gone. My body was telling me. I knew before we got the confirmation from the ultrasound.  There was no longer a heartbeat. I knew before the doctor said the words. My Jasmine was gone.

In the next few hours, I had to deliver Jasmine. I had to go through childbirth and deliver her knowing I would not hear her cry. I remember crying to my husband and telling him I could not do this. I just wanted it to stop, but I had to do it. I had no choice. The nurses tried to prepare me by telling me that she may look different since she had already passed. I could not grasp what this meant. How would she look different? The silence when she was born was so deafening. And I still remember the weight of her as they placed her in my arms.  She was a little over 4 pounds. She was beautiful. We held her and had pictures taken with her. Then a couple of days later, we had to leave the hospital with a box instead of our daughter. I will truly never forget the kindness of the nurses that took care of us while we were in the hospital. We had a nurse come in when she heard what had happened.  She said she volunteered to come in during loss cases. That meant more than anyone could ever know.

Courtesy of Sarah Cox
Courtesy of Sarah Cox

We got home from the hospital that day and I remember all I wanted to do was watch something funny and laugh. I wanted to laugh again. We turned on America’s Funniest Home Videos and it felt so good to laugh. That is, until a whole section of baby videos came on and I lost it again. It was so hard to accept what had just happened, actually happened. Jasmine would never be coming home with us. In the days that followed, we tried to get back to as ‘normal’ as possible. I went back to work after a week as I just could not sit at home and cry all day. I needed to do something that would provide distraction.

One of the other terrible things about having a late-term loss is that you still have to go through the same postpartum period that you would after having a living child. Your body still hurts and has to heal. Your milk still comes in and is yet another painful reminder that your child is gone. I did everything possible to try to dry it up as quickly as possible. I hated looking at my body that still showed the marks of carrying her. The extra weight gained and the stretch marks. All reminders that Jasmine was gone.

We were so fortunate to have a loving support system. Family and friends sent us meals, gifts, flowers, and cards. I chose to be open about the difficult pregnancy after the diagnosis and about the loss. She was our daughter, just as our living children are. I shared her picture after she was born and I share our story whenever I have a chance. Though she was with us a short time, Jasmine was so loved and I take comfort in knowing that all she ever knew was our love for her.

There were definitely times I wondered why this happened to me. Was I bad person? Did I do something to deserve this? How could someone ever deserve to lose their child? Over time, I came to the simple conclusion that I was not a bad person. I did not do anything to deserve this. It is just a fact that bad things happen and they sometimes happen to good people too. I was never comforted by the phrase everything happens for a reason. What possible reason would be good enough for me to lose my daughter? I miss Jasmine and think about her every day. I think about how she would be with her siblings and how old she would be each year. We throw a birthday party for her every year. I tell her brother and sister about her and we always try to include her in everything that we can.

Six months later, we did fertility treatment and I got pregnant. I had a smooth, yet super-full-of-anxiety-and-fear pregnancy and gave birth to our rainbow daughter. At each appointment, I was worried about receiving news that something was wrong with this baby too. I would get the news that everything was okay, be comforted for a few days, and then the anxiety would start to creep back in. I was induced at 39 weeks at the same hospital where we lost Jasmine. The moment I stepped foot into one of the birthing rooms again, I could picture that day that we lost her. A huge wave of emotion crossed over me then. After our second daughter was born and placed on my chest, all I could do was cry tears of relief at the sound of her first cry.

Courtesy of McGowan Images
Courtesy of McGowan Images
Courtesy of Sarah Cox

I wrote about our pregnancy after the loss and I got involved in a pregnancy loss organization. I knew I had to help others who had experienced or were going through loss. Pregnancy and infant loss can be such an isolating time. People do not want to talk about your baby for fear of upsetting you. People think you should just get over it already or that you are grieving wrong or grieving too much. Simply put, people that have not experienced loss just do not understand. We all grieve differently and on our own timelines. There are good days and bad days. Days I do not cry and days I get an unexpected wave of grief that overcomes me.

I was inspired to share the rainbow skirt I purchased for my maternity photos with other loss moms and create a place for them to share their stories of finding their joy again after loss. I was worried no one would want to participate at first. Now, a year later, I have already had over 70 participants. The whole point of Project Finding Your Rainbow is to raise awareness and show how loss parents can find their rainbow again after a loss. This does not always mean having another baby. Sometimes we find it in other ways, like starting a new business, a nonprofit, or doing something to help others. I did have a rainbow baby, but I have also found another rainbow and so much joy in helping others who have experienced pregnancy loss. I am building a community of people that truly know the pain of this loss and can provide support and encouragement throughout all the tough moments of living a life after the loss of a child. I have had so many different people participate. Those that have had a rainbow baby already, those that were still trying for a baby, and those that were currently pregnant with their rainbow baby.

Courtesy of Sarah Cox

I realized that not all people who went through loss had a great support system. Some were afraid to talk about their loss. Some felt they were not able to. Some did not want to. Pregnancy loss is something that affects so many of us, yet so few talk about it. It was not until I had a stillborn daughter that I realized it happens to so many others as well. The loss community is one that no one chooses to join, but when you get there, you realize how incredibly kind and supportive it is. So many strangers were there for me more than some people I knew well. Loss truly shows you who is there for you and who is not. I want to help be that support system for others so that they at least have one person they can talk to and share their story with.

Many people who have participated in the project have told me how much it means to them. How powerful and healing it was to be able to share their stories. Some have shared before, and others were give the opportunity to share for the first time. For me, it is a small gesture I can make to help others heal. Many other people have reached out to tell me that the stories I post give them hope that they will also find their rainbow after loss, whatever that may be.

Courtesy of Sarah Cox

My advice for anyone that is going through or have already gone through loss is to not be afraid to share photos or talk about your child. The more we talk about loss, the more it will hopefully become normalized. Take pictures with your baby and hold your baby. I could not look at the pictures for a while after our loss, but now I am so grateful to have them. They are the only pictures I will ever have with her and of her. Now I Lay Me Down To Sleep will send in a photographer for free to take photos for parents who have lost a child. Remember that you are not alone and you do not have to grieve alone if you do not want to. There are many support groups and people you can reach out to.

Jasmine may not be here physically, but she is with me in spirit in everything I do. This project is all for her. I help others in memory of her. Every time I see a rainbow, I feel that she is telling me that she is happy and she is okay. And I know that one day, I will see her again. Until then, I hope she knows how much I love her and how much I miss her.”

Courtesy of Sarah Cox

This story was submitted to Love What Matters by Sarah Cox from Atlanta, Georgia. Follow her journey on Instagram, and her website. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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