Losing Ethan

October 21, 2016 • By Candace Marshall Humphrey, M.P.H., Health Communications Specialist, Office on Women's Health

Our beautiful baby boy was born at 24 weeks. When my doctor said that he was out, I held my breath, waiting and praying to hear him cry. When he took his breath, I released mine. He was immediately rushed to the neonatal intensive care unit (NICU). Shortly after I returned to my room, one of the nurses came in and asked me for my cell phone. She took it and returned with pictures and a video. That video was the first time that I saw my son.

Each day, my husband and I would travel to the NICU, visiting for hours while watching, praying, and talking to Ethan through the openings of the incubator, while getting to know his amazing medical team. We knew Ethan's odds of survival. We were very scared and concerned, and we felt the concern of the medical team as well. Ethan was what they called a "day-by-day baby" and their goal was only to get him to live until the next day. Each day, the goal would reset.

So I held on to my faith, believing in the unexpected but fully aware of our reality. I held on to my trust that the medical staff would do everything they'd been trained to do, and I held on to the knowledge that some babies born earlier and smaller than Ethan do survive and thrive.

But even with everything that I knew, nothing could prepare me for losing him. He had progressed so well up until the day that he died. He just needed more time. Twenty-nine days with him wasn't enough. We left the hospital numb and empty, unable to process what had just happened. I'm not sure how we were able to drive home.

The days following were dark. I couldn't eat or sleep. I felt like I was living a bad dream and couldn't wake up. The floor beneath me had crumbled. I thought about the lost moments with Ethan. I would never see him smile or his first tooth. I would never see him take his first steps. There would be no macaroni-and-string necklaces or finger-paint drawings on the refrigerator. No first grade pictures with missing front teeth. No birthday celebrations. No proms. No graduations. I would never hear him call me Mommy.

Some of the responses from people made it worse. Some stopped calling and disappeared. I guess it was because they didn't know what to say. Others quickly said, "You're young, you'll have another," "God doesn't make mistakes," or "It's His will." These were all phrases no one should ever hear when they lose a child. And yet I heard them…again and again, along with some others. These sayings didn't help me heal, they added to the hurt. But for each action that hurt, there were so many others that were filled with love, support, and healing. I found comfort from my husband, family, close friends, church, and former and current co-workers.

I was so touched by the actions of my OB-GYN who was so considerate toward my loss. She called me as soon as she found out about Ethan to check on both me and my husband. What I didn't know until that call was that she had gone to the NICU to check in on him regularly before she made her rounds. When I went to her office for my next checkup, she entered the room without her white coat and without my chart. She hugged me and let me cry for as long as I needed. She wasn't standing there just as my doctor, she too was a mother and more importantly, she was someone who cared. For her, these may have been standard practices, but for me, they were so special.

After talking with others, I was surprised to find that I knew several couples who had lost a child through miscarriage, stillbirth, or after a live birth. Some had grieved in silence by choice and some because they didn't know what to do or where to go. I also felt lost. There is no rule book or roadmap for going through any of this.

Thankfully, someone recommended that I join a Share Pregnancy & Infant Loss Support group. The support group along with grief counseling sessions has taught me how to deal with my grief in healthy ways. One of things that I've learned is to DEER: Drink. Eat. Exercise. Rest. Remembering to DEER has helped me to take care of myself each day, regardless if the day is good or bad. I can't go back to my life as it was before losing Ethan, so learning how to function within a "new normal" has been so important.

My advice for those who are dealing with a similar loss is to take the time that you need to heal. Know that it's okay to grieve and that the grieving process can go on for many months. The grief may seem overwhelming, but connecting to your family, friends, support groups, and professional counseling can help. Do not be afraid to seek counseling, especially if you feel that you want to harm yourself or others.

October is Infant Loss Month. Most people will never know about this observance or that October 15 is Pregnancy and Infant Loss Remembrance Day. On this day, people light candles across the world at 7 p.m. in each time zone to remember the babies that have died and their families. If you know someone who has lost a child through miscarriage, stillbirth, or after a live birth, please take some time and reach out to them, not just during this month but throughout the year. The hurt of losing a child goes beyond October — it lasts for a lifetime.