The “right time” to pull our daughter off life support.

I often see questions like this in NICU support groups on social media: How will I know when it’s the “right time” to consider letting go of my baby's life? As a mother who faced the heartbreaking decision to take my daughter off life support, my honest answer is that you will know when the time comes. If you have any doubts or questions, I encourage you to move forward with whatever medical options are presented to you.

We fought for our daughter's life from the moment I was 12 weeks pregnant. At that time, a high-risk doctor at one of the top hospitals in Virginia urged me to terminate our daughter and continue with only our son. He cited issues he detected with her placenta and warned me about the risks I was taking for my health and the health of our son. However, abortion was not an option for our family. After considering his warning, we canceled all future appointments with that doctor. It became clear to us that he believed we were making the wrong choice, and we needed a doctor who would advocate for the lives of both our children.

We found a doctor an hour away who was willing to fight for our daughter’s life as much as we were. We drove for hours each week to attend appointment after appointment. I hired a doula who helped me create a special night that would give us the best chance of survival. Once we urgently delivered and she was healthy, we assumed we were in the clear.

Our NICU experience with our daughter was typical for the first seven days. We had to trust her medical team; there were ups and downs, but we were assured that all of it was normal. Every day, I would pray over her, read Psalm 91 in her room, and leave the Bible open to the verse as I departed. To say that we wanted her and fought for our daughter is an understatement.

Not 24 hours after I was discharged from the hospital, we received the urgent “come quick” call from the NICU doctor. Our daughter was having a difficult time maintaining her blood pressure. By the time we arrived, her nurse was working tirelessly alongside a team that included respiratory specialists, pharmacists, and several doctors to provide the life support she needed. I will never forget the moment I realized my daughter was not expected to make it. The pharmacist looked at me with tears in her eyes and sympathetically said, “I am so sorry.”

Deep down in my gut, I knew what was coming. We kept taking the next step, following each medical option presented to us. A surgeon from VCU came to see us but wasn’t willing to perform a full surgery because Calvary wasn’t strong enough. Instead, he proposed a bedside procedure that could potentially help. We consented, and he completed the procedure successfully. Unfortunately, in the end, it didn’t make a difference. We continued with more blood pressure medications, more antibiotics, more blood transfusions, and high jet ventilator settings, yet her blood pressure remained critically low at 22/14.

Earlier that day, I had decided not to look into her isolette, cherishing the beautiful memories of her blue eyes gazing at me—alert and full of life. Around 1 AM, her doctor sat us down for a conversation that I had been dreading. While I had anticipated it, it came as a shock to my husband. Medically, there was nothing more they could do. The only reason her heart was still beating was due to the life support she was on.

A surge of adrenaline struck me as I got up to look at her. What she said was clear to me, but her skin appeared discolored. It looked like she had been dead for a long time, honestly. “Pull it off,” I yelled. “What are we doing?” If I’m honest, this was also the moment when anger consumed me. I couldn’t pray my baby to heaven; I was furious with my circumstances. We were supposed to have a testimony—the one where we didn’t abort our child and she lived. She would have had a good life, the best life! We were good parents, parents who fought for our children. We were parents who provided a safe, healthy household. Around this time, I also started throwing up. My emotions were all-consuming.

After about fifteen minutes, the doctor came in and stopped us from removing anything or making any further decisions. She suggested we try one more blood transfusion. Fred and I consented, even though the nurses, my husband, and I all knew it probably wouldn’t work. However, what it did give us was time. This two-hour blood transfusion, which no one believed would be effective, allowed us two precious hours to prepare. We discussed how we wanted to do it: who would hold her as she went to heaven, what pictures we wanted, and whether we wanted the monitors on or off. It gave my husband time to read her one more bedtime story. It gave me a chance to talk to her and say the things I needed to say. The unexpected gift of time allowed us to throw everything at the wall, and for that, we were grateful.

Eventually, the doctor returned with tears in her eyes to tell us that there had been no improvements. I touched her shoulder and said, "I know." We began the heartbreaking process of holding our baby while she transitioned to heaven. The nurses turned off all the monitors, quickly stopped the medications, and respectfully ended all support. The impossible decision we faced was ultimately the only decision to make. We had done everything we possibly could; the NICU team had tried every option available, but we just knew it was time.

If you don’t have that sense of knowing, I encourage you to keep fighting for your baby. There were many moments when we stood in faith against the odds and spoke life over our child. In those moments, it simply wasn’t the right time and she still had life. I won’t tell you it was "the peace that surpasses all understanding," because that wouldn’t be truthful. There was nothing that felt peaceful about this. What I will say is that I had a deep conviction that this was the reality we were facing and that we had done all we could do on this side of heaven.

Fred Reading Calvary her last bedtime story.

More than 40 medications and a 70% ventilator setting