By: Amy Dohr
Mommy to Naomi
resting on angels’ wings
I found out I was pregnant in August of 2018. We had been trying for almost a year, so we were ecstatic. But, my husband and I both have achondroplasia dwarfism, which created a sense of worry for our baby. Long story short, we had a 75% chance of having a healthy baby (either average size or little like us). That leaves a 25% chance that our baby would inherit both of our dwarfism genes, and that would be lethal (called double dominance). Most babies with this condition only live about an hour or so after birth.
I prayed every day, from the day I found out I was pregnant, for a healthy baby. Every day. My ultrasounds looked great early on and my body was responding well to the pregnancy. Through the blood test, we found out she was a girl! I was scheduled for an amniocentesis in early November. This would tell us if our baby was healthy or had double dominance. The ultrasound before the amnio didn’t go well. My high-risk maternal fetal medicine doctor was concerned that our daughter’s chest cavity was not developing as it should, a sign of double dominance. Still, I had hope that the amnio would tell us she was healthy.
The days after my amnio waiting for the results were more than difficult. It was supposed to take about 3 weeks to hear back. My husband and I went on a family trip to Oklahoma. On the last night, I received a call from our genetic counselor. Naomi, the name we had already given her, had both my and my husband’s dwarfism genes. She had double dominance.
I was angry. I was more than angry and I was hurting. I was the angriest at God. After all my prayers and faithfulness, how could he do this to me and to my baby? Then, I felt guilty. I felt like I shouldn’t be angry because at any moment God could decide I didn’t deserve Naomi and take her away. (I know now; He isn’t like that.)
The rest of November was a blur and Christmas was not joyful at all. At the encouragement of my pastor, I started grief counseling. I wanted to make the most of our time together while she was still alive and growing in me. I continued praying every day, but this time, I prayed the results were a mistake, that she would survive, that we would be scrambling to put together a nursery after her birth because we hadn’t bought anything. I prayed for a miracle, but being a woman of faith, I know that even though God answers our prayers, He doesn’t always answer them the way we ask Him to.
We told a few people close to us that I was pregnant. Then, we had to go back and tell them her prognosis. Most people reacted the same… “Oh, I’m so sorry!” Me being me, I felt like I had to be the one comforting them. I didn’t want others feeling sorry for us. The hardest part was when the sympathy cards starting coming in the mail. I know everyone had good intentions, but Naomi was still alive. We hadn’t lost her yet. In my eyes, everyone was acting like she was already gone.
Unfortunately, there were a few people, even people close to us, who didn’t understand why I would continue to carry Naomi knowing she was going to die. I heard later that an acquaintance had asked one of my friends why didn’t I just get an abortion. Not that it was anyone’s business, but I chose to continue to carry Naomi because I would rather have a minute with her than to never have known her.
My c-section was scheduled for March 28th. That was my deadline. It was the end of December and I had about 3 months left. I had a lot to do before her birth, a lot to plan. I wanted to get her a special blanket and outfit. I wanted to have a maternity photo shoot and set up a photographer for the day of her birth. I made sure my pastor knew the date so he could be there to baptize Naomi. My mom was having her wedding dress made into an angel gown for her. I was trying to make sure the worst day of my life would also be the best day of my life.
I was miserable during January. I had gained a lot of weight due to excess amniotic fluid. My back was constantly hurting and I couldn’t sleep. I didn’t know how much longer I would be able to make it, and I was scared to complain. I hadn’t completed any of the plans I had made because you know, I had 2 more months.
I woke up the morning of Monday, February 4th to say bye to my husband before he left for work. Then I was going to sleep a little longer, get up and get dressed, and go to my staff meeting. After my husband left for work, I thought I had to go to the bathroom, but that I didn’t make it on time… at least that’s what I was hoping. I think instinctively I knew my water had broken, but I was in denial. I called the nurse who told me to come in and get checked out. I called my mom as a heads up, and I called my boss to tell her I was going to miss our staff meeting. She understood and asked if she could tell my coworkers. I said, “No, not yet. I don’t want everyone to worry, and it just be that I peed my pants.” What I didn’t know is that they had planned a surprise shower for me during the staff meeting, so everyone noticed my absence right away.
“You are 5 centimeters dilated and I felt a foot,” I remember the nurse telling me this clearly. I had nothing ready. I didn’t have a special blanket, outfit, or her angel gown. I hadn’t taken maternity photos or set up a photographer for the hospital. My pastor was out of town. My parents who live in Texas and had their flights booked to come at the end of March, were still in Texas. I was 29 weeks and 3 days pregnant and I was in labor. This is not how it was supposed to be.
My doctors had been trying to stop my labor, but at that point, it was too late and Naomi was on her way out. I was rushed to the OR. I didn’t even have time to take out my contacts and I remember the nurse calling out as we went down the hall “Do you know your blood type?” Ironically, my blood type is B positive, but my hopes to deliver my baby and spend at least an hour with her were fading. A baby born this premature, even one without a lethal condition, would have a small chance surviving.
With my whole “baby plan” out the window, all I could do is let God take over and continue praying for my miracle. The hospital reached out to find a photographer. No one was available it for delivery, but the coordinator for the hospital’s baby loss program had a camera and took the pictures for us. Naomi Faith was born alive at 4:25 in the afternoon. They brought her straight to me without weighing her, measuring her, or cleaning her up because we didn’t know how long we would have with her. I vividly remember the moment they brought her to me, I felt a physical shock of love go through my body. By instinct, I started singing her “You Are My Sunshine.” My husband said the whole OR stopped and listened.
Three minutes after Naomi was born, she was baptized in my arms by the hospital’s chaplain. An hour went by, and she was still alive. We had opted for comfort care, so they only gave her a little oxygen to keep her comfortable. A nurse checked her heartbeat often. It started in the 100s, then went down to the 90s, and then the 80s. We thought we were going to lose her soon, but her heartbeat went back up to the 90s and stayed fairly consistent. She could only open one eye, but it was the most beautiful shade of deep blue I had ever seen.
In recovery, a photographer from On Angel’s Wings came up and took amazing photos. My in-laws who live in town had been there all day and took turns getting to love on her. I video-chatted with my parents to make sure they could see her alive because neither one of them could get a flight up here until the next day. My pastor surprised us and arrived in the evening after rushing home from out of state to be there for us. He baptized Naomi for a second time. I’m so glad he did because I couldn’t remember her first baptism.
When the neonatologist came to check on her, I said I wanted to feed her because I hadn’t eaten since the night before, so obviously neither had she. He said babies don’t need to eat this early after birth. I was so angry. This is my baby, and I am her mom. She may only be on this Earth for a short time and I wanted to make sure she ate. I didn’t want her to suffer.
I stayed up all night with her. I talked to her and sang to her. I told her about everyone in our family. The nurses came in frequently. They helped change her into a cute outfit, and found her a hat that fit her tiny head. They listened to me. At my request, they brought in formula in a tiny syringe to feed her, and she took it. She had two diaper changes. I was able to be a mother to my baby girl.
By morning, she was still with us. My husband came in and said, “Where are my girls?” She let out a small, very short cry. This was the only she time made a noise, other than tiny squeaks and hiccups. Her heartbeat stayed consistent. My mom made it in the early morning and got to meet her granddaughter. My dad, stepmom, and stepsister made it shortly before noon, and Naomi was still alive. She met all of her grandparents. My husband’s cousin came up to the hospital and met her. I proudly presented her to everyone who came in.
Around two in the afternoon, I noticed she was starting to gasp for air. My stepmom, a NICU nurse, picked up the stethoscope and checked her heartbeat. We were losing her. Everyone said their goodbyes to her and left the room so my husband and I could be alone with her while she passed. I sang to her “You Are My Sunshine” again. “Please don’t take my sunshine away”. When she stopped gasping, my husband got the doctor and she called Naomi’s time of death. 2:26 pm on February 5th. She had lived for 22 hours.
The hospital let us continue to keep her in my room after she passed. They brought in a Cuddle Cot, which kept her cool to slow down her body’s deterioration. More of my close friends came up to see her. No one minded that she had already passed.
When my maternal fetal medicine doctor came in to check on me, I asked her if there was a medical explanation for how Naomi was able to live so long being that she was very premature and had a lethal condition. She told me there was no medical explanation. Even though I didn’t receive exactly what I asked for, God answered my prayers for a miracle and gave me Naomi. As if that wasn’t enough to prove miracles are real, Naomi was born with a birthmark in the shape of a heart right on the tip of her nose.
We had her cremated and planned her celebration of life about a month later. We didn’t want a funeral. I had to accept I couldn’t control people’s feelings, but I was hoping we could make it a happy event. It was sad, but it was wonderful.
Today, a lot of people don’t realize, I love talking about her any chance I get. I love telling her story. My work named a scholarship after her that I get to present and tell her story. I tell her story at presentations for a national pregnancy and infant loss group. She makes me so proud and she always will. She is my miracle.
