Charlie's Story

I remember so vividly the day I found out I was pregnant. Though I thought there was no way I could be pregnant, I told myself I’d just take one test to be sure. I peed on the stick and hopped in the shower, promising myself I would finish my shower and then I’d verify that it was indeed negative. To be clear, it wasn’t that I didn’t want to be pregnant. I wanted it desperately but I knew it wasn’t time yet. I was in a rough place in my life... though my heart had always wanted a baby my brain knew I was far from a healthy place in life. So I couldn’t let myself hope.

I finally looked at the stick. I couldn’t believe my eyes - both lines were there, forming a beautiful little plus. I kept looking back at the test because it didn’t seem like it could be real. I went in to work, but my mind was far away, imagining all the lovely new ways my life was going to change.

I set an appointment with my OBGYN for what I thought would be 8 weeks along. I planned excitedly for the arrival of my baby, picking out clothes and toys and bedding. Two weeks before I was supposed to have my appointment, I started spotting. I was terribly scared that I might have miscarried. I remember talking to the baby I was desperately hoping was still alive, telling it to hang in there because I loved it and wanted it to survive more than anything! The doctor’s office set me up with an ultrasound the next day.

Much to my relief, the ultrasound technician confirmed that there was indeed a live baby growing inside me and I was farther along than I thought, measuring at 10 weeks! My eyes were glued to the ultrasound screen. My baby looked like a tiny person, not just a blob. I saw it move around, waving its arms up and down just like an infant would. Facial features were even distinguishable which amazed me!

The ultrasound tech mentioned that she was having trouble seeing the baby’s lower limbs, which she blamed on the position he was in, so I wasn’t too worried. They said they’d send me across the hall to a specialist who’d be able to see better. I went to the specialist’s ultrasound room, excited to see my baby again. This technician also could not see much of the legs. I asked her if that was terribly unusual, and she tactfully indicated that it was pretty unusual, and that the legs were very small. She told me that the specialist would take a look at the pictures and be in to talk to me.

This child was mine and I would love it, legs or no legs. It was a little bump in the road, but I wasn’t phased. I sat in the room for what felt like forever. I couldn’t imagine what was taking so long. Why couldn’t they just come in and tell me that the baby was going to have tiny legs? I hadn’t even considered that it could get worse.

The doctor finally called me in. He told me that there seemed to be something seriously wrong with my baby, and that its chance of living was incredibly small. Some organs looked to be outside of the body and the legs were underdeveloped. The doctor told me that trisomies or other genetic conditions were likely, and recommended we do a blood test for those. We agreed. He also told us termination would be recommended since there was little chance of life. I was shocked.

In the week that I was awaiting results, I researched trisomies and other conditions the doctor had mentioned. By the end of the week, I was completely sure that there was no condition under which I would terminate. Even if the test result came back positive for something judged lethal to the baby, I was going to give it as much life as possible. This was my child. My unconditionally loved, wanted, perfect child.

When I got the call with the results they told me that it all came back normal, and that I was having a boy! I was so happy and hopeful and excited for the pregnancy once again. I could handle a few birth defects. I’d love my son just the same.

But at the next appointment with the specialist, my hopes were brought back down. He explained that because there were multiple defects there was likely a bigger problem that would prevent survival after birth. I didn’t want to believe it. I kept doing all of the normal things, talking to my baby every day, singing to him in the car and keeping my hand on my growing belly almost constantly. I named him Charlie.

I don’t think the reality of the situation sunk in for me until after I read the fetal MRI report. They detailed all the problems - more than had shown up on the many ultrasounds. And they listed the likely cause as Limb Body Wall Complex, which I had heard of but hadn’t wanted to acknowledge. On the way to work that day, I cried in the car. Uncontrollably. I felt so helpless. All I was doing was waiting for the end, and I couldn’t do anything to change it. My son, my beautiful son Charlie was going to die.

I tried to accept reality while still enjoying the time I got with him. I talked to him and touched my belly whenever I had a free hand, feeling for his movements. I’d poke in different places on my belly and he’d meet each poke of mine with a kick or punch of his own. I don’t know, of course, but I felt like he knew it was a game. He seemed to recognize voices, and he’d move around way more when someone was talking. Everywhere I went, I felt like I was taking Charlie on an adventure with me. I enjoyed each and every moment.

I had a c-section at 34 weeks because I had been having regular contractions and our doctor and specialist advised us that Charlie couldn’t make it much longer. I checked into the hospital at 8:45a.m. on September 17th. They put a monitor on me so I could hear his heartbeat. He was awake, and kicked the monitor throughout the morning. At 10:45 they took me to the operating room. The father and my photographer were allowed to be there but they took me back first to get ready. I remember sitting on the operating table feeling like I couldn’t do it. I wanted to run away. I wanted to be anywhere but there. I didn’t want them to take Charlie out of me, I just wanted him to stay safe in me forever. I felt my legs and stomach slowly go numb.

At 11:16, I heard Charlie’s first cries. I was so surprised, because I hadn’t expected him to cry at all! His cry was loud and I couldn’t help getting my hopes up that he was healthier than they had thought. He was a real little person, my little person. He had lots of thick brown hair and big dark blue eyes, and he was perfect. They placed him on my chest and I stroked his head and let his fingers wrap around one of mine. His eyes opened a little bit, and he took some big breaths. He moved and made faces when I touched him. I held him close, and he drooled on my chest a little bit. They checked his heartbeat every few minutes, and each time it slowed down a little bit. He seemed to just fall asleep painlessly and drift away. He lived for two hours, which was more than I was expecting, so I am thankful. But it went by way too fast.

Nothing could have prepared me for how much I miss him. I have memories of him in every place I went during pregnancy. I wake up in the night and reach down to pat my belly only to realize that he’s not there anymore. Things I liked to eat during pregnancy remind me of him. It’s hard, and it’s miserable, and it hurts more than you can imagine if you haven’t been through it. But I know if I had it to do over again, I’d make the same choices. I got to know him and love him, and I did everything I possibly could have for him, which gives me some peace.

But every minute of every day Charlie, I wish you were here.