Monday, October 12, 2015

Limb-Body-Wall-Complex Babies Aren't Monsters

When I found out my unborn son's condition was most likely Limb-Body-Wall Complex, the first thing I did - since I'm not a doctor - was google it. Now don't get me wrong, googling is very helpful. But what I wish I had known at the time was that the "images" part of google isn't always the best. If you google Limb-Body-Wall complex, you're going to see a lot of monstrous things. Most of the examples are very young underdeveloped aborted babies (who tend to look like sweet little aliens even if their organs aren't hanging out). When you combine that look with the more extreme physical problems that can come along with LBWC, the result can be a little intimidating. That's not the image that expecting parents should see.

I'd like to share with you here my son in all his freshly c-sected glory. Is he all clean? No. Is his body perfect? No. But is he a monster? Not by any stretch of the imagination.


 This one was taken right after he was taken out of me. You can see they're still wiping my blood off of him and he was letting out his first little cries!
A little more cleaned up here. They had the organ bag ready, but it wasn't necessary since his omphalocele was small. 

 Here you can see his omphalocele - his bladder was the only organ on the outside. 
 His back was a little extra wrinkly because of the myelomeningocele on his back.  
They literally wrapped him in plastic wrap to keep everything secure.   
His left leg was small and thin, and at the end instead of a foot he had one big beautiful toe (complete with a toenail). 
All wrapped up, right before they gave him to Sean. 
 Holding Sean's finger and laying on my chest. 
Perfection.

Wednesday, September 30, 2015

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 since I had used birth control carefully, 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 serious relationship, but it was pretty early on, and though my heart had always wanted a baby my brain knew it would be wise to wait until I was married. 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 stood still, hands shaking, eyes bright and watery. 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 had Sean over that night to give him the news. While getting pregnant wasn’t what we had been planning for right at the moment, we both agreed that we loved each other and we would love this new addition to our family no matter what. As it turned out, the “no matter what” part would be tested more than we could have imagined at the time.

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. Sean and I went to visit our friends who lived out of town, and I could barely keep myself from sharing our big news. Two weeks before I was supposed to have my appointment, I found a spot of blood in my underwear. 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, which I appreciated as I was worried sick and could barely sleep.

Sean and I went to the appointment together. 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. 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 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. We went to the specialist’s ultrasound room, excited to see our 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 us that the specialist would take a look at the pictures and be in to talk to us.

I remember asking Sean if he was okay with a baby with tiny legs. He replied without hesitation that he was, saying that he wasn’t too tall himself, so our kid would fit right in. I felt the same. This child was ours and I would love it, legs or no legs. It was a little 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 come in and tell us that our baby was going to have tiny legs? I hadn’t even considered that it could get worse.

The doctor finally called us in. He told us that there seemed to be something seriously wrong with our baby, and that its chance of living was incredibly small. Some organs looked to be outside of the body and the legs were underdeveloped. Sean took my hand and didn’t let go. It was comforting to know that I was not alone. The doctor told us 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. We decided to name him early and Sean chose - Charles Henry Jervey - Charlie for short.

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, Linkin Park’s Waiting for the End came on the radio, and I cried. Uncontrollably. I felt so helpless. That’s all I was doing - 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 Sean’s voice, and he’d move around way more when we were together. Everywhere I went, I felt like I was taking Charlie on an adventure with me. I enjoyed each and every moment. I remember laying next to Sean watching movies with his arm around me and my hand on my belly feeling Charlie’s kicks, cherishing our time as a family.

We 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. We 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. Sean 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 my womb forever. I felt my legs and stomach slowly go numb and a tear slipped down my cheek. Sean was allowed in the room, and he came over to me and held my hand and talked to me to keep my mind off of what they were doing.
At 11:16, we 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. Sean went over to get him, since we had agreed that Sean should hold him first. He brought him over to me and I was amazed. He was a real little person, my little person. He had lots of thick brown hair just like his dad 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 Sean and I touched him. I held him close, and he drooled on my chest a little bit. Sean held him while they wheeled me back to the room. We let my parents come in and see him, but Sean and I were the only ones who held him while he was alive. 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, we wish you were here.

*Photos (except for the first three and last two) by Rebecca Tredway