Ezra Michael Perkins

On November 18th, 2025 Keenan, my husband, and I found out we were pregnant! We had just gotten married and we were ready to start a family. When we got the positive pregnancy test it felt like everything was right in the world. We could not WAIT to tell our family. Of course we waited a couple weeks, but it was so fun to see everyone’s reactions to the news. Early pregnancy was normal for me, nauseated, tired, hungry, moody. But I loved it, I loved being pregnant and knowing I was growing a part of me and a part of Keenan. At 12 weeks pregnant we found IT’S A BOY! We had names picked out for years for both a boy and a girl, so we already knew his name; Ezra Michael Perkins. Ezra is a family name of Keenan’s and Michael is my dad’s name. We love his name so much. As soon as we found out he was a boy I obviously started shopping, making our baby registry, and picking out our nursery theme. Keenan loves to golf, so his nursery was a vintage golf theme! Over the next two months pregnancy was great, he started moving, I started getting some energy back. Keenan and I were so happy.

At our 20 week anatomy scan we had so much fun watching him on the screen. We were dreaming of who he would look like, what kind of personality he would have. After the scan, instead of leaving us in the room to wait for the doctor the tech walked us into a conference room. I knew something was up, the tissues on the table told me everything I needed to know. Something was not right. Mom intuition is real! The doctor came in and explained that Ezra had a giant Omphalocele, (also called exomphalos) is a congenital birth defect where an infant's intestines, liver, or other abdominal organs stick outside of the body through the belly button area. Ezra’s contained his entire liver, part of his intestines, spleen, and stomach. The doctor explained that we would have to deliver him via c-section at Riley Children’s Hospital in Indianapolis. He also explained that we would have to have a few appointments, over the course of the rest of the pregnancy, down at Riley. I felt like I had failed Ezra, like my body could not properly create his body. After prayer and research, over many weeks, we felt that God knew we could handle this diagnosis. So, we made the best of our situation and started learning everything we could before our first appointment at Riley.

At 25 weeks we had our first appointment with Riley. It was mainly an ultrasound, meet with the surgeon, and of course talk insurance and logistics. At that appointment we also made our “care conference” appointment, which we had at 29 weeks. Now, at our first appointment we also scheduled my c-section. They wanted me to get to at least 36 weeks, did I mention I was high risk before his diagnosis? Yeah… pre-existing type 2 diabetes (controlled might I add) and gestational hypertension. So, they really wanted me to try to get to at least 36 weeks and I believe my c-section was scheduled for July 24th. Which would have been around 37 weeks. We also met with a genetic counselor who went over our genetic history, and we learned that almost always an omphalocele is a fluke. There is usually NO genetic tie to the diagnosis. However, it can come with a Trisomy diagnosis- which he thankfully did not have.

After meeting with the doctors and nurses at the first appointment we left feeling pretty good! We knew he would have some surgeries after birth, but we felt like we could handle it! Then came the care conference… second to worst day of my life… you will hear about the first soon. I had to have an MRI so they could see his omphalocele clearer than what an ultrasound could show. After the ultrasound we sat in a conference room filled with two doctors, two nurses, a social worker, and on zoom we had three more doctors. This was very intimidating for us. They begin the care conference by telling us his condition was much worse than they had thought after seeing the MRI results. Basically ALL of his abdominal organs had come out of his belly button area and they had started making a hole in his diaphragm and pushing his lungs and heart upwards. His lungs were also only growing at about 50% and at 29 weeks they should have been much closer to 100%. They then told us that he would have to be in the NICU for at least 6 months, and he most likely would not receive his first surgery until about 2 years old. They want to try and get gravity to push the organs back inside for as long as possible before closing up the hole. But anyways, at least 6 months in the NICU, in Indianapolis, 3 hours from family, friends, work, support, our home and our dogs. We were a WRECK. And then on TOP of all that they told us with how bad his condition was, it was very likely he would never breathe or eat on his own, and survival after birth was very low as well. It pretty much felt like a punch in the gut. Again… second worst day of our lives.

Just a few days after the care conference I had a MFM appointment back at home. I was having weekly ultrasounds to monitor his omphalocele. Just like any other appointment they take us back and the tech turns the ultrasound on, and as soon as she put it on my belly she takes it off. She says “you were just at Riley a few days ago right?” I said “yes why?” and she responded “um nothing I forgot something I will be right back.” And she swiftly leaves the room. I looked at Keenan and I said “something bad is happening.” He is so optimistic he said “no babe I think she just forgot a piece of paper.” But I knew… I knew something was not right. She comes back in the room with a doctor and a nurse, and my heart shattered. The doctor explained that Ezra had no heartbeat. He was gone. I just remember looking at Keenan, we were both in shock. And then we both broke down. They told us we could stay in the room as long as we needed, and to let ourselves out when we were ready. I had to get out of there, so we left. I left carrying our dead son in my belly. The FIRST worst day of my life. I got a call later to come in to my regular OBGYN, and so the next day Keenan and I went there to schedule my induction. Since Ezra had passed I did not need a c-section and could have a vaginal birth, but obviously had to be induced. I was exactly 3o weeks pregnant when he passed. I was exactly 31 weeks pregnant when he was born to Heaven. Labor and delivery went smoothly, other than the fact that our baby was dead. My doctor and the nurses were amazing. So loving and comforting. It was as peaceful of an experience as it could have been.

Ezra Michael Perkins was born to Heaven on May 30th, 2025. He was born sleeping. We wished so badly it was a nightmare and we would hear his first cry when he was born. But we didn’t, the room was filled with sniffles and tears. Scream cries from me. Keenan trying to comfort me. It was awful. When we got to see him we quickly realized he was his dad’s twin! He was so precious and perfect. His earthly body stayed with us for a few hours before the nurses took him away. I am grateful for that time we had with him. To hold him, kiss him, and cuddle him. I was recovering fine from my epidural and delivery, so we were able to go home the morning after I gave birth. That time in our life does not even feel real some days.

Grief is weird. It never goes away. It comes in waves. Even to this day, 18 months later, I still have days that feel like I can’t get out of bed. Some days I feel like I am perfectly healed. If I am being honest, it has been more awful than not. My husband and I sold our home and moved in with my parents for 6 months due to my mental health. It is a HARD journey to navigate, losing a child. I am thankful to be doing better and we are trying for our rainbow baby. Not a day goes by that we do not think about our Ezzy Bear though. He will always be our first baby, a stillborn baby is STILL born!

My goal for this foundation is to provide any sort of relief to families going through a similar journey as we did. To provide honesty and let people know it is not going to be easy. But there are resources, there is community, and there is hope for the future.