By Aubrey Wilkins
Mommy to Jensen
Anencephaly
July 7 – July 13, 2025
We found out we were pregnant with our third child on November 4, 2024. We told our families a few weeks later and had our first scan at nine weeks gestation. Baby looked good, and we were excited to become a family of five.
In my first trimester, I had so many experiences that brought up miscarriage. It was to the point that I told so many people I was kind of waiting for the other shoe to drop. One night, while lying in bed, I told my husband, “I’m not saying this is going to happen, but if I miscarry, God has prepared me.” Looking back, I’m so glad I verbalized those feelings because it has helped validate my experience that much more.
The weekend before the anatomy scan, I started bleeding. I was on edge, but I knew I had my scan first thing Monday morning. I took it easy, and while lying in bed, I became emotional over another family on social media who was sharing their struggles with cancer. While I was sad for them, my emotional response became extreme. I sat up, and everything in me became quiet. I had the thought that I was going to lose the baby. I assured myself we would find out in the morning and tried to move on with my day.
Of course, we did find out the next day.
We went in for our 20-week anatomy scan and were told we were having a boy. Because of his positioning, we were asked to come back for additional scanning. Our sweet ultrasound tech saw his anomaly fairly quickly but kept her composure and continued the scan as best she could to get us a few pictures. A scan that normally takes 45 minutes to an hour only took about 20 minutes.
We left the hospital talking and dreaming about having a third boy to raise.
On the drive home, my husband asked if this one felt different. After a moment of hesitation, I told him that something did feel different, but I couldn’t put my finger on it.
Ten minutes after we arrived home, we received a call from the head of imaging at the hospital, who also happens to be a dear family friend. He told us he was 99% sure that our baby had anencephaly, a neural tube defect that is fatal. Seeing as this was my third pregnancy, we had expected a normal pregnancy and to bring home a third child to raise with his brothers. That expectation was shattered in a matter of seconds.
Of course, I was on Google immediately trying to wrap my brain around what was happening. We were immediately in tears. I asked what my options were, and he said the doctors would offer to terminate, or we could choose to carry as long as our baby would let us. We knew right away that we wanted to carry our boy as long as we could.
My husband then told me that when he had asked if this one felt different, he had the thought that he didn’t feel like we were going to meet him.
When we started researching anencephaly, everything we read said that most babies pass in utero. We thought we would most likely lose him in the third trimester. But once we connected with our high-risk OB, they had a different perspective and felt there was a good chance we could carry Jensen to full term. While we were hopeful, we also knew there was a very real possibility we could lose him at any time.
We prepared ourselves for every possible scenario—plan A through Z. Jensen was the boss, and we wanted to be ready for anything. But to be honest, we thought he would most likely be stillborn or only live for a few minutes.
After his diagnosis, my husband and I had talked about the name Jensen here and there, but I felt prompted to look up its meaning. Jensen means “God is gracious.” We knew the day of his diagnosis that his name needed to be Jensen.
While this didn’t feel like a gracious act from God, we also recognized that we had been prepared. It may not have looked how we expected, but we felt His love and His preparation for us.
The months following Jensen’s diagnosis were filled with doctor visits, additional scans with maternal fetal medicine, and lots of texts and phone calls with our sweet social worker.
The week before my 39-week induction, I had a strong feeling that I was going to need a C-section. Jensen was moving a lot and would switch between head down and transverse. The morning of my induction, we found that he was head down, and I remember feeling confused and even a little disappointed because I couldn’t understand why I felt so strongly about a C-section.
I wanted a vaginal delivery. I had two bereavement doulas offering their time and support to help me bring Jensen into the world. But after laboring all day and only dilating to a tight three, I became emotional and felt like I needed to have a C-section. It felt completely counterintuitive, but mother’s intuition is real.
Within the hour, we were prepped and headed into the OR.
Jensen was placed on my chest, and he cried. A sound we weren’t sure we would ever hear. He whined and cried for a short time in the OR, and it was so special.
After surgery, I was wheeled back into our room where our family was waiting for us. The On Angels’ Wings volunteer photographer was there as well, capturing those first moments—our family meeting Jensen, his brothers meeting him, and all of the raw emotions in the room. It was past midnight, and she was such a calm, steady presence.
The nurses kept checking Jensen’s vitals, and for those first several hours, he was doing well.
The following evening, we were told he was having small seizures and that his oxygen levels were low. We began preparing to say goodbye. That night, he slept next to my husband on the couch while the nurse checked on him throughout the night.
But his vitals started improving.
The next day, he was still holding strong, and we asked if we could go home early. They agreed.
We brought Jensen home after three days in the hospital, and we were given three full days with him in our home.
He passed after six days of life—a miracle I am happily claiming.
Jensen’s six days were filled with both beauty and heartbreak. He had frequent seizures, and my husband and I would take turns at night holding him and trying to keep him comfortable. He was calm and quiet for most of his life, which was a blessing—but as a grieving mother, I now wish I had heard his newborn cry more or seen his eyes open more often.
He only opened his eyes a handful of times, but he was so sweet. He had the softest cheeks. He was perfect. Despite his physical imperfections, his spirit was perfect.
He brought Heaven into our home. It was tangible and real. Family who came to meet him could feel it and commented on it often.
After Jensen passed, I began to understand just how life-altering this diagnosis would be. I now find myself struggling with questions like, “How many kids do you have?” and wondering when and how to share about Jensen.
I find myself doing normal things—grocery shopping, taking my kids out—and looking at people around me, thinking, They have no idea that I just had major surgery, gave birth, and buried my baby.
There isn’t a lot of anger, at least not yet. But there is a quiet heartbreak that comes in those moments. Seeing babies with their moms—being nursed, being carried—that should be me right now. That’s a hard reality to sit with.
When those feelings come, I remind myself that I don’t want anger to be tied to my pregnancy, my birth, or Jensen. Because while there were incredibly hard and sad moments, there were also so many sacred and beautiful ones.
Our boys are trying to understand, even at such young ages. Our four-year-old asks often if “all babies are going to die.” He’s starting to understand that Jensen’s brain was outside of his head and that’s why he couldn’t stay with us. Our three-year-old asks to see pictures of Jensen and talks about how cute and silly he was.
Those moments are both beautiful and heartbreaking.
Truthfully, though, we are coping well. Our faith and our ability to see God’s hand throughout this experience have brought us a great deal of comfort. We have hard moments—hours and days—but we feel loved, we know Jensen is loved, and we know we will see him again.
I’ve thought a lot about what I want for the future of our family. I think the best way to honor someone is to talk about them and share their stories. When I share about Jensen, I want people to feel God’s love for His children, to feel a small part of how we experienced God’s presence through Jensen.
We were connected with On Angels’ Wings a few weeks after our diagnosis through our social worker. I filled out a request form and was contacted shortly after.
We were blessed to have two photo sessions—one at Jensen’s birth and one in our home a few days later. While all of the photos are incredibly special, the ones in our home mean the most to me. They represent something I never thought we would have—the chance to bring our sweet anencephalic baby home.
The photographers were so kind, calm, and intentional. They captured our family in such a genuine way and made us feel completely comfortable in such tender moments.
The pictures OAW has provided our family are truly priceless. Having photos from Jensen’s first moments of life and photos of him in our home is something I will cherish forever.
Welcoming a baby into the world is not cheap, and when you add a difficult diagnosis, the financial burden grows even more. Being able to have professional photographers capture the most important moments of our lives—free of charge—was a huge weight lifted.
When Michelle offered to send another photographer to our home, my husband and I debated it. We didn’t know how much time we had, and we didn’t want to take away from that time with Jensen. But we decided we wouldn’t regret having more photos.
And we were right.
These photos will be cherished for the rest of our lives. They will hang in our home forever. They are how we share Jensen’s story, and they capture him so perfectly.
