A Short Story About Anencephaly

Anencephaly

     I got pregnant when I was twenty-five. I was so happily married, and I was ready to take care of this child. My lovely husband, Jude, was so excited to finally become a father when I told him I was pregnant.
     The first few months were wonderful. We bought everything we needed and started fixing up a nursery in the room that we used to use for Jude's office.
     I was obsessed with my baby. I did punnet squares over and over again, trying to figure out how my baby would look. With my brown hair and Jude's blonde, there was a 50% chance either way. However, both Jude and I had blue eyes, so the baby was pretty much certain to have blue eyes.
     I went for another ultrasound when I was sixteen weeks in, and the doctor informed me that I wasn't having just one baby, but two. I was pregnant with twins. I'm not sure how we missed that for so long, but I was overjoyed.
     Jude and I weren't struggling financially, but we decided it would be best to hold a shower once we knew the genders. We needed a little help with some of the extra stuff.
     I lived in my delusion of a perfect life and perfect family for three more weeks after that. I started to get a very bad feeling right around nineteen weeks, so I scheduled an ultrasound and went in on June 21st, when I was twenty-one weeks into my pregnancy. Because I felt so off, Jude came with me.
     I knew something was off as soon as the doctor started checking the baby on my right side. His eyes filled with concern and he even looked a little bit sad. Dr. Jones is usually a very cheerful man.
     I was always a very cautious woman, so we had a very experienced and smart doctor. The best one we could get locally. I trusted that he would catch and fix a problem if there was one.
     So when he turned to me and placed a hand on my shoulder, I was way more than just concerned. I looked up at Jude, and he grabbed my hand and squeezed it.
     "I- I'm sorry, Mr. and Mrs. Edwards." Dr. Jones said, bringing my world crashing down around me. "But your child has a congenital birth defect called anencephaly. Approximately three in ten thousand infants are born with it. I am very sorry."
     "What- what is that?" I asked, my heart beating wildly. "Is my baby okay? Will it affect both of them? You can fix it, right?"
     "Sweetheart, I- I don't think this can be fixed." Jude said, kneeling beside me. "I've heard of this before. If I recall correctly, that's what Darla's baby had, remember? The one where the baby's brain doesn't fully form."
     I gasped and looked at the doctor. "Is that true?" My worst fears were coming true. What were the odds that my baby would have the same defect as my sister's baby?
     "I'm afraid so." he frowned sadly. "In basics, the child's brain will not be fully formed and the pieces that are formed will not be covered by a skull. The average life expectancy for children with this diagnoses is only a few hours. They rarely live more than one day."
     I could not have heard worse news than that. One of my beautiful babies wasn't going to make it. The poor infant didn't even have a fighting chance.
     "Will the baby live at all? Or will it be a still-birth?" I asked, dreading the answer.
     "It depends. Cases have gone both ways. You also have the option of terminating the pregnancy right away." His answer made me angry, and my pregnant hormones went a little haywire.
     "That is not acceptable." I spat. I would never terminate a pregnancy. That isn't fair to the child. Did you know a fetus's heart can start beating as early as fifteen days into the pregnancy? At that point, I consider these infants to be human beings, not pawns that I can just throw away without consequence. And not only is this one baby, but two! And one of those sweet babies doesn't have this defect! That baby has a chance at living! And you expect me to just take that away? I can't even believe you would freaking suggest that!!!"
     I may have used a different word than "freaking" at the time. Dr. Jones was very patient with me, and allowed me to catch my breath and calm down before he said anything else. Jude was kind enough to whisper in my ear and help calm me down as well. To this day, I am still very happy and grateful he was there.
     "I understand you feel this way. I completely agree." Dr. Jones said. "That's why I think it would be best to give the infants their names before they're actually born. This way, at least it has an identity even if it is still-born."
     I agreed with this, and asked to know the genders. Two baby boys, who I decided to call Casey and Jasper. Casey was my sick baby and Jasper was my relatively healthy one.
     That night, I ordered custom onesies for my wonderful babies. I also ordered hats and footies for them. Their hats had their names on them. One was blue with red writing (for Jasper  Elliot Edwards) and the other was red with blue writing (for Casey Jacob Edwards). The entire outfit followed the blue and red color scheme, and their onesies each said "I was born with this nerd" and had an arrow pointing to the other one. I wanted Casey to enjoy his short life, no matter how short it ended up being.
     Jude explained the situation to all our family and friends, and people stopped by constantly to give their regards in person. We received cards and letters and completely unnecessary presents, but I was grateful that we had so much support. I made sure to send each person a personal thank you note.
    As I grew closer to my due date, I fell into a harsh depression. I ate more than usual, and I know I was difficult to be around. Jude was nothing but supportive and wonderful, but other people grew wary of my constant depressive state. People stopped dropping by to check in, and we only received phone calls from my parents and sister. Strangers continued to smile and ask to touch my stomach when I talked to them, but they didn't know how painful it was for me.
     I talked to Casey and Jasper every night, preparing them for what was to come and letting Casey know as much about his family as I could. I sung to them and tried to help them experience the world through my own senses. I told Jasper to enjoy as much time with his brother as he could, and I told Casey that he was a wonderful child and that I was very saddened that I would not be able to properly get to know him.
     Finally, two days before my due date, I went into labor. It was November 1st, and despite the impending fate of Casey, I was very excited to meet my two beautiful sons. Jasper came first, at 3:34 A.M., and he was so sweet. He cried, of course, but he was just so cute. Casey came about three minutes later, at 3:37 A.M., and he hardly even cried. His voice was so soft and he was so much smaller than his brother.
     The doctors cleaned them both up and I had them dressed in their special outfits instead of the usual hospital outfits. The moment they were placed in my arms was the happiest moment of my life. Casey seemed so alive. It was hard to believe he wouldn't be for much longer.
     I decided not to dwell on what would happen. I would instead cherish my time with my sons until it did happen. I was so tired from the medication and the strain of giving birth, but I refused to fall asleep just yet.
     "Hi, Casey. Hi, Jasper." I smiled at them as they opened their eyes sleepily. Casey reached out and grabbed my finger with his tiny hand, and I think Jasper was jealous because he started whining and trying to reach my other finger. I adjusted my position so that they could both hold my fingers.
     Jude was so proud of his sons. He took Casey from me and sat next to me so he could still see Jasper, too. We made sure to take plenty of pictures of our family while it was still all together.
     That night, at 11:52 P.M., Casey passed away peacefully in his sleep. He had fallen asleep holding onto my finger, and I stayed up to be with them. I knew it had happened when his tough grip loosened around my finger and his little hand fell to the bed. I pulled his hat securely onto his head and leaned down to kiss his chubby little cheek.
     "I will always love you, Casey Jacob Edwards." I whispered. "You are my beautiful son, and I hope to see you in Heaven. For now, you are in Jesus's hands. I love you, my sweet baby."
     Jude and I had a private burial four days later, with just us, Jasper, my parents, and Darla.
     To this day, I still miss my baby, but I am very grateful that I got to meet him and hold him in my arms. Jasper is ten years old now, and he has a seven-year-old brother and a three-year-old sister. Jude and I couldn't be happier, and while Jasper still wonders what it would have been like if his brother had lived, we are all very happy with our family. And Casey will always be a part of our family.
     Forever and always, my baby boy will not be forgotten.

     Please note that this is a work of fiction. The people mentioned in this story do not exist. However, anencephaly does exist and while it is rare, it is still a very traumatic experience to go through. My regards go out to any families that have been affected by anencephaly. A good friend of my family recently had a wonderful baby boy. When she was seventeen weeks in, he was diagnosed with anencephaly, and she worked to prepare herself emotionally. Obviously it still hurt, but she was very glad she got to meet him at all and she was very glad to call him her son.
     There is currently no way to treat anencephaly, and few babies with this congenital birth defect live more than even a few hours. Some are born still, and some live only minutes.
     Anencephaly is a neural tube defect in which parts of the brain and skull do not fully form. It most often effects the cerebrum and frontal lobe of the brain. As well as that, most parts of the brain that do form, if there are any, are not protected by bone or even skin.
     I advise you NOT to google anencephaly. It is very graphic and is treated very medically. It's a sad thing, but one that some people simply have to deal with. They require support from family and friends in order to get through something like this.
     I ask that if you ever know someone who is pregnant with a baby who will have anencephaly, you do not grow tired of them. Please offer as much support as you can and try to be as sensitive to the situation as possible. Many who go through this experience depression or depressive moods, and it can get hard to be around them. They do not usually realize how down they're being. You must be patient and calm with them, and offer them your love and support.
     Thank you for reading this story. I assure you that I have done my research about this issue.
     I have a two-year-old nephew who I am very grateful for and I love very much. Every moment of every day, I am so thankful that he is alive and healthy. Please enjoy your lives. Be grateful and thankful for them. Not everyone is fortunate enough to be able to live for so long. So many accidents can happen and so many diseases can be developed.
     Learn from this story. Enjoy and appreciate your life and the lives of your family and friends. Life is a very precious and fleeting thing.
     My regards to anyone who is going through the loss of a loved one.
                                         Sincerely,
                                                  M.L. Topinka