Coping with Infant Loss

by Jamie Le Sesne Spears, Family Engagement Specialist

Ever since I can remember, I have known two things about myself – I was going to be a teacher and I was going to have a family of my own. One of those dreams came quite naturally, and I have had the privilege to love and educate many young children over the years. It was starting a family that proved to be rather difficult. Here is my story of infertility and infant loss.   

We are 1 in 8.

Our parenthood story started with grief. My husband and I are the one couple affected by infertility out of eight. After two years of trying, we had our first round of in vitro fertilization (IVF). We were blessed to get pregnant. It sounds so simple when you write it out in a couple of sentences, but if you have experienced infertility and IVF, you know it is anything but simple. 

He was 1 in 2500.

It was at our 20-week ultrasound when we learned we were having a son, Reid. We had a few minutes to take in the excitement before we learned that our baby was diagnosed with a Congenital Diaphragmatic Hernia (CDH) – a birth defect causing the diaphragm to not fully form, allowing abdominal organs to enter into the chest cavity and preventing the lungs to grow. Just one of every 2,500 babies are diagnosed with CDH, and those babies have a mere 50% survival rate. For the remainder of the pregnancy, we were hopeful, but we also feared and began to grieve what might be.  

He was 50%.

Reid was born on July 11, 2017. He was beautiful and perfect. We knew he was going to be sick due to CDH, and shortly after birth, he was placed on life support. In the weeks that followed, we celebrated his life while grieving in preparation for the worst. His last breaths on earth were in my arms as we shared our past, present, and future together. He was the 50% of babies that die from CDH.  

The days that followed were numb, the weeks were paralyzing, and the months were empty. Yet, amid it all, we learned how to celebrate life and embrace a parenthood that is paved in grief. Reid underwent more in his little life than I had experienced in mine. He taught me about strength, love, and perseverance. He showed me that love isn’t always happy, and grief isn’t always sad. We never imagined this to be our story, but it is. It is in the fabric of our family. We share Reid’s story because it keeps his memory and our love for him alive.  

We are not alone.

There are so many other parents like us, and you may be one of them. Or, you may support a grieving parent as a family member, friend, or professional. Sometimes it’s hard to know what to do or say. For more on my story and guidance on supporting families like mine, view the video of our recent Infant Loss and Bereavement Panel.