I am a proud mother of three. However, I hold one child in my heart instead of in my arms. I’m sharing my story with the hope that another bereaved mother will find some peace in knowing that she is not alone. Our stories may be different, but we share an extraordinary bond. And we will always miss our babies, whether they died yesterday or 30 years ago. Ours is a love that never ends.
At 25 weeks pregnant, a seemingly routine ultrasound appointment turned into a nightmare. I was stunned to learn that my son had complex congenital heart defects, along with Heterotaxy Syndrome. Basically, his organs and veins were not pieced together like yours or mine. I was told he might die. But he might also live a full life. I felt paralyzed by the weight of uncertainty during the remainder of my pregnancy. Instead of prepping a nursery and daydreaming of the future, I was grieving the healthy child I had expected to have. After all, my first-born was perfectly healthy — a miracle that I had clearly taken for granted. All I could do was trust our medical team and try my best to have faith over fear.
My son Miles came into the world February 17, 2014 at 35 weeks. He was beautiful — perfect in my eyes. They whisked him away to another room immediately after he was delivered. He would not be able to breathe on his own for very long. I heard his cry from a distance as I lay helplessly on the hospital bed, aching from the pain of not being able to comfort him. I wanted more than anything to hold my baby — a primal need that went unmet for days. Miles was sicker than everyone anticipated. So much so, the NICU doctor looked me in the eye and told me my son “was probably not going to make it.” There was no time for skin-to-skin bonding. There was only survival. Miles needed to be transported to Children’s without delay. I was discharged a couple of hours later, disoriented by the physical shock of no longer carrying a baby in my womb and fueled by the strange breed of adrenaline that comes from knowing your child is miles away in the care of strangers. I needed to be with him as soon as possible.
Miles died six days later following two open-heart surgeries and several other medical interventions. He was exceptionally strong, but his body was tired. I finally got to hold him as his walnut-sized heart stopped beating. My husband and I drove home with empty arms, dazed and in disbelief. I had milk in my breasts but no baby to nourish.
I sometimes question whether I should have spent precious time away from Miles’ bedside to pump. But I know deep down it was the right thing to do because it was done out of love. At the time, it felt like pumping was the only thing I could do for him as his mother. I knew how important it was to establish my milk supply because breast milk would be the best thing for his fragile health and I longed to give him the comfort of nursing in the days ahead. With this in mind, I diligently pumped every three hours at the hospital and handed my milk over to the nurses to keep frozen. I thought that one day Miles would be well enough to drink it. I thought we would have more time with him. He never got that opportunity. He did, however, get a small taste of my milk on a cotton swab as part of his daily oral care.
I quit pumping shortly after Miles’ funeral. It was too difficult for me emotionally. That spring, my youngest nephew was born. He and Miles would have been buddies at just three months apart. I made the decision to give my pumped milk to him. It was sad to let go of the milk, as it felt like another part of Miles that I would be losing, but it was also gratifying to know another family member would benefit from it. It was like a birthday gift from Miles to his cousin. To help myself feel better, I took a photo of my frozen milk to keep as a memento.
Infant loss is not something we often talk about. Yet, there are many of us in the community who have experienced it and are trying to navigate life on the other side of loss. Sadly, more mothers join this “club” every day. And all too often their stories are not told. The names of their children are rarely spoken. One of the hardest things for me to contend with in my grief journey is the idea that Miles might be forgotten. People tend to think that it’s best not to talk about my son with me because it might make me cry. In reality, the silence hurts more deeply than any potential gaffe one could make talking about him. If you know someone who has lost a child, I urge you to recognize the child’s birthday, mention the child’s name, or try to include him/her in the holiday season somehow. We all grieve in different ways, but anything you can do to honor the child’s memory would have great meaning to a bereaved parent. And those gestures help us heal.
This summer, I gave birth to a healthy baby girl. She looks a lot like Miles — and that makes me smile. We had a rough start but she is nursing well now. I certainly have a new appreciation for what a privilege it is to be able to breastfeed.
Although Miles is physically gone, he will never stop being my son. I feel his presence in my life in ways I can’t fully describe. And if someone asks, “How many children do you have?” I will say I have three. Claiming anything else feels wrong, as it would diminish the person who lived more bravely than anyone else I know.