Letter

Baby Charlie lived two hours after birth, but his life shares that every child is precious

Charlie

Mary JamesI remember so vividly the day I found out I was pregnant. Though I thought there was no way I was pregnant, I told myself I’d just take one test to be sure. To be clear, it wasn’t that I didn’t want a baby. I wanted one desperately, but knew it wasn’t time. I was in a serious relationship, but though my heart wanted babies, my brain knew it would be wise to wait until I was married.

I finally checked the test. I couldn’t believe my eyes – both lines were there, forming a beautiful plus. I stood still, hands shaking, eyes bright and watery. I went in to work, but my mind was far away, imagining all the lovely new ways my life was going to change. I had Sean over that night to give him the news. While getting pregnant hadn’t been in our plans, we agreed that we loved each other and we’d love this baby no matter what. As it turned out, the “no matter what” part would be tested more than we could have imagined.

I made a doctor’s appointment and planned excitedly for the arrival of my baby. Two weeks before my appointment, I bled a little. I was terrified that I might have miscarried. I remember talking to the baby I was desperately hoping was 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.

Mary-James-Charlie-ultrasoundSean and I went to the appointment together. Much to my relief, the ultrasound technician confirmed that there was indeed a live baby and I was farther along than I thought, 10 weeks already! My eyes were glued to the ultrasound screen. My baby looked like a tiny person, not just a blob. We 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 she was having trouble seeing the baby’s lower limbs, which she blamed on his position. They sent me across the hall to a specialist. This technician also couldn’t see much of the legs. I asked her if that was terribly unusual, and she tactfully indicated it was, and said the specialist would be in shortly.

I asked Sean if he was okay with a baby with tiny legs. He replied without hesitation that he was, saying he wasn’t too tall, so our kid would fit in. I felt the same. This child was ours and I’d love it, legs or no legs. It was a bump in the road, but I wasn’t phased. We sat in the room for what felt like forever. I couldn’t imagine what was taking so long. Why couldn’t they just tell us our baby had tiny legs? I hadn’t considered that it could get worse.

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The doctor finally came and said there was something seriously wrong with our baby, and that its survival was unlikely. Some organs were outside of the body and the legs were underdeveloped. Sean took my hand. The doctor told us that chromosomal abnormalities were likely, and recommended a blood test. We agreed. He also told us termination was recommended. I was shocked.

While awaiting results, I researched the conditions the doctor had mentioned. By the end of the week, I was confident that there was no chance I would terminate. 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 they told me that it all came back normal, and I was having a boy! I was happy and hopeful for the pregnancy again. I could handle a few birth defects. I’d love my son just the same.

But at the next appointment, the specialist explained that since there were multiple defects there was likely a bigger problem that would prevent survival. I didn’t want to believe it. I kept talking to my baby every day, singing to him in the car and touching my growing belly almost constantly. We decided to name him Charlie.

I don’t think reality sank in until I read the MRI report. They detailed all the problems, and they mentioned Limb-Body Wall Complex, which I had heard of but hadn’t wanted to acknowledge. On the way to work, Linkin Park’s “Waiting for the End” came on the radio, and I cried. I felt so helpless. That’s all I was doing – waiting for the end, and I couldn’t do anything. 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 felt for his movements whenever I could. 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 felt like he knew it was a game. He seemed to recognize Sean’s voice – he’d move around way more when we were together. Everywhere I went, I felt like I was taking Charlie on an adventure. I enjoyed every moment.

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On September 17th, we checked into the hospital and they put a monitor on me so I could hear his heartbeat. He was awake, kicking the monitor throughout the morning. At 10:45 they took me to the operating room. I remember sitting on the operating table wanting to run away. I didn’t want them to take Charlie out of me, I just wanted him to stay safe in me forever. Finally Sean was allowed in the room, and he came and held my hand.

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At 11:16, we heard Charlie’s cries. We hadn’t expected him to cry at all! His cry was loud and I couldn’t help getting my hopes up. Sean brought him to me and I was amazed. He was a real little person – my little person. He had thick brown hair like his dad, and he was perfect. They placed him on my chest and I stroked his head and held his hand. His eyes opened a bit, and he took big breaths. He moved and made faces when Sean and 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 slightly. He seemed to just fall asleep.

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He lived for two hours after his birth, which was more than I was expecting. But it went by 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.

Mary James charlie

It’s hard, and it’s miserable, and it hurts more than you can imagine if you haven’t been through it. But 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 could for him, and that gives me peace.

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

sean-mary-charlie

*Photos provided by Mary James. Read more and see more photos at Mary’s blog.

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