Milo Martin

In October of 2021 my husband and I had a “missed” miscarriage, learning at 14 weeks that our baby girl had no heartbeat. This was devastating, and the months that followed were extremely difficult. In March of 2022 I was thrilled to learn that I was pregnant again. I felt hopeful, having been assured by my doctor that there was no reason to believe that I had more of a chance than anyone else of miscarrying again. I went in often during the first trimester to hear Baby’s heartbeat, and recorded it on my phone for reassurance. I started feeling him kick at 16 weeks. Going into our twenty week anatomy scan everything had been going well, but I was still extremely nervous. The ultrasound tech was friendly and easy to talk to. She told us that our baby had a beautiful heart. After she was done she said that she was just getting the doctor because there was one thing she couldn’t get a good picture of, and the knot in my stomach tightened. The doctor came in and I could tell by her demeanor that something wasn’t right. After several minutes she informed us that our baby had no nasal bone, which was a strong indicator of Down Syndrome. We went to have blood drawn for genetic testing. It was the end of the day and everyone was in a hurry to go home. The ultrasound tech forgot to give us the pictures of our baby, which we had requested that she put in an envelope so that we could find out the gender later at home. We had to go to my parents house to pick up our daughter, and there was a lot of family waiting there to hear if we were having a boy or a girl. We didn’t tell anyone what we had learned, just that the heart looked beautiful and that they had forgotten to give us our envelope. I called the office the next day and learned that we were having a son. The two weeks of waiting to hear the genetic results were very hard. My husband wanted me to have an abortion. He was very upset. Every day I bargained with God, weighed the odds that our son was genetically normal after all, tried to convince myself that he did have Down Syndrome because I thought if I stopped hoping that he did not, somehow that would influence the outcome. All the magical thinking. And all the while I could feel him moving inside my belly, kicking and rolling. He seemed to move every time I thought about him. At the end of two weeks we learned that our son did in fact have Down Syndrome. The doctor told me that I could have an abortion if I wanted to, though I would have to drive to a bigger city. I couldn’t imagine doing that, not when he was so real inside me. The coming weeks were up and down. I found his name, Milo, on a list and fell in love with it. I told my husband and he liked it too. I felt angry, sad, and then sometimes at peace. I still sometimes tried to convince myself that there would be a miracle and he didn’t have DS after all. I imagined that he would be born and the doctor would tell us he was normal and I would call him Milo the Miracle. Sometimes I was so angry I felt like I couldn’t face this reality, and I was so uncomfortable I thought about harming myself. Then he would kick and I would feel so guilty. There were good times, too. I reached out to several parents who had kids with DS, and read personal stories on websites. I bought several books about Down Syndrome. These parents loved their children, of course, and helped me to realize that what seemed like a terrible, unacceptable reality just looked that way because it wasn’t what I had imagined. I felt that there was a community for us, and that all that mattered was that we would love Milo and our family would be exactly as it was supposed to be. 

I had to go in for growth scans every four weeks during the second trimester. The first one was good, there were several other markers for DS but Milo looked healthy. The tech was really kind and I felt my spirits lift. My husband came with me for the second one, at 29 weeks, and we were both in a terrible mood going in. I don’t remember what I was so mad about, but we sat in the waiting room in icy silence. When we finally went back and the tech started the ultrasound, the first question she asked was, “did he have this fluid in his lungs before?” I said I didn’t think so. She continued the scan and told us that Milo had a lot of fluid in his body. She said that the doctor would be coming in and that we were going to have to have a very serious conversation. I felt numb, but I remember thanking her for being up front with us. The doctor came in and told us that this was called Fetal Hydrops, and that it meant Milo was going to die. She did say that there was one possible intervention, which would involve giving me a lot of steroids to inflate his lungs and then having a C section. She said he would have to go directly to the NICU and that the prognosis was still very grim. It was like being slapped in the face. I couldn’t believe it. She left the room and my husband and I sobbed and held each other. Milo was still moving inside me, although I realized that over the past several weeks he had been kicking less and rolling more. I thought it was because he was running out of room. The doctor had said that we could call her later that evening to talk more, once the shock had worn off. We called after our daughter had gone to bed. We asked more questions about the intervention, though I knew in my heart that I didn’t want to do it. If he was going to die anyway I didn’t want his last moments to be filled with pain and confusion, ripped from the warm home he had known all his short life. The doctor did not recommend it either, because the prognosis was so poor and to have a surgery would involve some risk to me. We said we would talk more about it. The next day we had to fly to Colorado to play at a festival. I wanted to go, I needed the distraction. It was a very surreal weekend. I talked to a lot of people, they all asked if we were having a boy or a girl and how far along was I? I would smile and tell them we were having a boy and he was due in November. Then I would go back to the hotel and cry and cry. Milo kept moving inside me. I started to think that when we got back home I would call the doctor and tell her that we did want the intervention. How could I give up on my son? Didn’t I need to try everything I could? One night at the festival there was a big storm, and the sky was black. I looked up and saw a rainbow against the dark clouds. I didn’t know what it meant but it gave me hope. 

We got home late Sunday night. Monday was Labor Day, and I called into the doctor’s office and left a message saying that I wanted to discuss the intervention further. I didn’t hear back. That night my husband had a gig and after I put our daughter to bed I sat in the chair in our living room and cried and sang to Milo. I told him that he didn’t need to be strong for me anymore. I felt him move. That was the last time. The next day I called my OB’s office and left a message telling them what had been going on (we had been seeing Maternal Fetal Medicine since the anatomy scan). They didn’t call back. On Wednesday morning the OB called and told me to come in right away. She confirmed that Milo’s beautiful heart had stopped beating. She told me that I’d have to go to the hospital and be induced. I asked her if I would get to hold him and she said that it might be traumatic for me to see him. I called my husband and told him to pick our daughter up from school, take her to her ballet lesson, and then drop her off at my parents’ house. In the mean time I took a long drive. I went to a chapel that had always had special meaning for me. I took ultrasound pictures of Milo and of the baby girl we had lost, and left them at the altar. I wept and prayed. Then I drove home, and my husband and I went to the hospital. 

I remember the nurse at the L&D reception was waiting for us. They had been told we were coming. She told us as she walked us to our room that her son, who was stillborn, would have been 30 that year. We were very quiet in the room. The doctor who was working that night was not someone I knew and I didn’t like her. She didn’t seem to care that we had lost our baby. They gave me something to induce labor and then we waited. When the pains got bad the nurse gave me morphine, which made me nauseas. Eventually I asked for an epidural. Milo Anthony Martin was born at 10:43 am on September 8th, 2022. He weighed 5lbs 4oz. At six that morning the doctors had switched shifts and it turned out that the same doctor who delivered our daughter brought Milo into the world. The nurse wrapped him in several blankets and handed him to me. I kissed his forehead. His skin was torn some on his scalp. I moved the blanket so that I could see all of him, then I wrapped him up and held him and cried. We spent that day and night in the hospital. I hardly felt that I had given birth at all, because Milo was so small. The nurses were all so kind. They made a plaster cast of his foot prints and put a box together of special things for us. Our doula brought us food and flowers and little electric candles. I would hold Milo for a little bit and then put him back in the cold cot, feel sad and pick him up again. I think that it was only then that I truly realized how little it would have mattered that he had Down Syndrome. All I felt for him was love, of course. I felt stupid for thinking that having a genetic difference would have made him any less my child. In the morning we were told that we could stay as long as we wanted, but I knew that it would only get harder to say goodbye. I held him and sang to him and told him that his great grandmother, who had passed only months before, was waiting to take care of him. Then I laid him in the box they had set out. The nurse put the lid on and walked out of the room with our Milo. I burst into tears and wanted him back but I knew it wouldn’t help anything. We gathered our belongings and went home. 

We never had a funeral for Milo. I’ve wanted to but because we didn’t belong to any one faith community I wasn’t sure how to plan it. I also felt a tremendous amount of shame for many months. I didn’t want to see anyone I knew, and I resented other friends who were having babies. It was very hard for me to accept love or help. I remember saying to our doula, Chelsea, that I didn’t feel as if I deserved any special treatment because after all, I didn’t have a baby to take care of. I cried a lot but mostly alone. We told our daughter who was three at the time that her baby brother had gotten very sick and gone to Heaven. She was disappointed but didn’t understand enough at the time to be really upset. Last year, for Milo’s first birthday we went apple picking and plan to do it again this year. I have bought him an ornament these past two Christmases. I kept his urn on top of my dresser and kiss it good night every night. Milo now has a younger brother who is 8 months old. He is a very happy baby and I like to think that maybe this is the same soul who tried to come to us twice before, and he is overjoyed to finally be here with his family. I don’t know what I believe. I wish it hadn’t happened this way but I don’t regret any minute of Milo’s life. Not a day goes by that I don’t think about him. If he had lived he would be two now.