Anencephaly, our bittersweet journey.
posted 13th Aug '12
On February 19, 2011, just one day after my 19th birthday, Dustin and I sat in the doctor’s office. I’d spent the night before in the bathroom in pain and throwing up, even at Burger King I couldn’t eat because I had to go throw up. I told Dustin I thought I had a kidney infection and he agreed I needed to go to the doctor. He rubbed my belly and jokingly said, “Wouldn’t it be funny if there was a baby in there?” I shoved his hand away and told him that it would absolutely NOT be funny if I was pregnant.
I’d peed in a cup and eventually the doctor came in and told me that I did not have a kidney infection, in fact, my urine was perfectly clean. He asked me, “have you been doing anything else?” I assumed he meant drugs so I replied no. His next words shocked me unbelievably. “Well, we did a pregnancy test and it came back positive.” I immediately started crying and the doctor instructed us to head over to the Emergency Room because the amount (and location) of pain I was having could indicate an ectopic pregnancy.
We sat in the waiting room and discussed our options, not really agreeing on much. But we’d found out just an hour before and had plenty of time to decide, or so we thought. They ran their tests and eventually inserted a catheter to fill my bladder to do an ultrasound. They told me that it was extremely early in my pregnancy (about 2-3 weeks according to my hCG levels) and that more than likely they weren’t going to be able to see anything. Of course they didn’t see anything, and I panicked slightly. The good news was that there was nothing on my ovary, including the baby.
My pregnancy up until March 20, 2011 was pretty uneventful. Dustin and I had a falling out at the end of February and we didn’t talk again until May. Other than that it was just my horrible morning sickness, constant need for IV fluids, miscarriage scare, and low potassium levels. On the day of March 20 I was about 13 weeks pregnant and was going to my first doctor’s appointment, where I was to have an ultrasound. I’d not been that excited for something in a long time. It was like I was 5 and I was getting to open a present early on Christmas Eve. As cheesy as it sounds, it’s the best way I can even begin to describe how I felt.
Doctor Dotson started the ultrasound and as soon as I saw her tiny arms I started crying, little did I know I’d shortly be crying for a much different emotion. I was so happy to see her moving around, even though she kept her back to us the whole time. He showed us all her body parts and then spent an abnormal amount of time trying to see her head. Then he told us that he couldn’t see her head well and that it was very possible that she could have Acrania or Anencephaly. “Neither are compatible with life,” my heart sank as he said these words and I just started crying even harder. My little baby, who looked absolutely perfect to me, wasn’t going to live?
I was told I needed to wait until May 2, 2011 before I could go see Doctor Campbell in Lexington (he’s a high risk OB). “I know it seems cruel but I’d like the baby to grow a little more.” So we waited, and on May second we made the trip to Lexington and they started the ultrasound. As soon as I saw her I could see something wasn’t right. They had a better ultrasound (a level 2) and she wasn’t lying on her side. I could see the profile of her face and her imperfect head. The tears started immediately. They quickly confirmed the Anencephaly and I was told I had two weeks to decide whether I wanted to terminate or not. The thought never crossed my mind to terminate and I knew I couldn’t do it.
My life had changed so suddenly with just one single word. Anencephaly. I was afraid to even look it up. When I did I was even more scared. The words describing this defect sounded so terrible. Deaf, blind, unresponsive, unconscious. My baby was going to be like this? How? Why? I had so many questions and the further I dug into the world of Anencephaly, the worse it seemed. Until I met Keri. Who had delivered a set of twins on March 21, 2011, her little girl had Anencephaly and she had got over 7 hours with her! I was introduced to Facebook support groups and other moms of sweet angels. I suddenly didn’t feel so ALONE, and that in turn made me slightly less scared.
Eventually I started feeling the baby moving around and kicking, I thought I’d never feel her. She was so active, it shocked me, from what I read it seemed like she wouldn’t be moving that much. She began to react to me pushing on my belly, she’d kick my hand as I pushed, or move away. She reacted to loud noises and even cold objects. She hated having ANYTHING put pressure on my stomach and would kick all night long if I laid on my stomach, which just so happened to be the only comfortable way I could sleep.
At my 20 week checkup they confirmed she was a girl and we were very surprised to see her tummy was full. She was SWALLOWING, I’d read that was very rare. The ultrasound tech told us that she was even swallowing right at that moment, and we saw her little tongue as she drank the amniotic fluid. She then told us that if she were to not look at the top of the baby’s head she wouldn’t even know anything was wrong with her, she was perfect in every single way, of course besides the anencephaly.
The baby loved hearing her daddy sing and play guitar, she loved hearing his voice. She got so excited and started going crazy when he was around. Dustin loved her too. We’d take naps and I’d wake up with him rubbing my belly, or at least with his hand there. Whenever he kissed me goodbye, he kissed my belly too. He may not have been there the whole time, but once he found out something was wrong he was there for the both of us. As soon as he saw the ultrasound he was in love. This baby had so much love and she wasn’t even born yet.
I decided I wanted a C-section after researching the odds of her being born alive and how long she would live if I had a vaginal birth, also the complications that can come from trying to deliver her vaginally. My doctor, who was amazing throughout everything and I couldn’t even begin to thank him enough, told me he’d be glad to give me a c-section. As time got closer to my due date, October 24, 2011, we set the date for October 18th. It really started to sink in the closer it got to the date, and I was so scared.
On September 23rd I went to the hospital once again because I was having contractions. This was becoming an annoying reoccurrence. Only this time was different. Her heatbeat disappeared.
It took several nurses about 20 minutes to find it again. By this point I was screaming and crying, just begging them to go ahead and take her now. I wanted to hold my baby while she was still alive, and by this point it was looking like I wasn’t going to be able to. They told me they could do the c-section in the morning but it wouldn’t be my doctor, it would be his partner. I couldn’t bring myself to let the man who had offended me by asking me if I had decided what I was going to do with this pregnancy right after I found out do my c-section, and I Dr. Dotson had been there for me and I needed him to do it.
I got a phone call the next night from Dr. Dotson and we discussed my options. We decided that Monday morning I would be having this baby and I was to be there between 5 and 6. I was numb. Not excited and not scared. My friend Zach, Dustin and I all sat in my room and just talked and watched TV and eating. I was determined to eat all I could right up until midnight and that’s what I did. Dustin and I didn’t sleep that night, we talked about how much she weighed and what she’d look like. We couldn’t grasp really that this was ending so soon.
We got ready the next morning and we rushed around trying to get ready. I packed my bag with clothes and the baby’s things. I realized that I hadn’t bought socks and started crying. My mom told me to call my grandmother that she would go get her some. She agreed and I calmed down. It may seem like a stupid thing to get upset about, but I wanted everything perfect for her, and that included keeping her feet warm.
At the hospital I was checked in and hooked up to monitors, I was having slight contractions, but nothing serious. They prepped me for my surgery and told me I could walk back there. I sat on the edge of the table and into the nurse as the Anesthesiologist prepared to do my spinal block, I did really well until he said “This is my first time…” and then I jumped, causing him to laugh and say “I meant today!” He re-did the spinal block and I laid back. My mom and Dustin came in and finally they started my c-section.
I started to have a panic attack as soon as she was out of me, I didn’t even know she was out yet, but it was timed perfectly. As soon as she was separated from me I just panicked. They told me they could give me something but it would make me forget and I immediately just said absolutely not. I couldn’t risk missing even a second of my baby’s life. They eventually just gave me something for pain and I calmed down enough to actually look at my girl.
My mom held her first because Dustin was busy comforting me, but my mom handed her to Dustin and he started bawling. I touched her face and told her I loved her and she cried out. It was probably the most heartbreaking yet amazing sound I have ever heard. All I could do was laugh. I didn’t cry yet or anything. They told me they’d weigh her when we got back to my room but they thought she weighed about six pounds, which is insane. Dustin and my mom left with the baby as they prepared to take me back there too. It wasn’t long before I was in there with everyone.
I finally got to hold my girl comfortably and on my own. I couldn’t believe how beautiful she was. That was MY baby, and she was perfect. She had my lips and my eyes but had her daddy’s nose. She even had quite a bit of dark hair, I was so excited to see that too. They took her and weighed her and measured her.
Noela Grace Anne Pruitt, born 8:15 A.M. 3 pounds 9.4 ounces 15 inches long.
I couldn’t help tickling her feet, it was so cute to watch her jerk them away. She hated having her face touched, just like her momma, and would move her head away and cry out. I don’t think I’ve ever experienced as much love as this little girl did in her short time here on earth. The next few hours were a blur of people and nurses coming and going. We gave her a bath and dressed her. They’d listen to her heartbeat, which was about 88bpm as soon as she was born, and that broke my heart. Every time they listened it just got slower.
Eventually I realized I was going to lose her and I panicked, I started screaming that I needed her close to me that I wanted her with me. My mom undressed her and laid her against my chest. I remember looking at my mom and telling her she was gone and my mom just kept saying “You don’t know that.” But I did, and it was confirmed by two different nurses. I just cried and held onto her. The nurse did her footprints and handprints. Someone did the molds of her feet and hands. We got more pictures. This is the part I hate thinking about the most. The part where I can’t control the tears.
Dustin and I held onto her for several hours, I knew it was time to give her up. I don’t really know how I even managed to let go of her. My older brother took her and as soon as he and Noela were out of my sight I started screaming. I wanted my baby back and my mom just kept saying that they couldn’t bring her back, it was time to let her go. That was the first time I cried like that for that long, just screaming and crying. It was exhausting but at the same time if felt good.
I still get so frustrated without her, I need her back, I need to hold her. I know it’s impossible, but I NEED her. I don’t know how I’ve made it this long without her but it’s getting harder and harder. It sinks in a little more each day it seems and I don’t know what to do. My heart is so broken and it scares me that I will NEVER feel the same, I will NEVER feel alright. And most important I will NEVER be able to hold my baby again, and that is probably the scariest thing of all.