The Day Our Lives Changed

Most parents of a child with special needs remember the day their lives changed forever. They remember the day everything went from fine and dandy, to "oh hell, what is happening?" The day they were told something was "wrong" with their child. For my husband and I it was December 31st of 2008, we went to the perinatologist and received the worst news a parent can hear - that our baby girl was not going to live. I remember it like it was yesterday, even down to what I was wearing and what I was eating. A lot of what was said is Charlie Brown adults going "wah, wah, wah, wah" because I was in shock, but all the feelings are still there. On Christmas Eve 2008 we had an ultrasound to find out the gender of the babies, at that ultrasound we were told that Baby A (Georgia) had fluid on her brain, but we were also told that it wasn't that much and worst case scenario shortly after her birth they would have to put a shunt in to drain the fluid. As a mom this scared me because I didn't want my baby to have to have surgery but I wasn't terribly worried. I received a blessing from Darryl and was told that everything would be okay. But by New Year's Eve things were much much worse. On December 31, 2008, I drove to Darryl's work and we left together to go see the perinatologist (we left my car at his office). As we were driving our conversation was light hearted, we had no idea what we were in for. We arrived at the appointment, the technician did the ultrasound and gave us no indication that anything was wrong. As we waited for the doctor we were laughing and joking. I was sitting there eating a granola bar as the doctor walked in. She sat down to talk to us. She told us that our baby had holoprosencephaly, at the time I didn't even register the diagnosis but what I did register was her saying "and its always fatal." I felt like the rug was pulled out from underneath me. I immediately went numb. How could this happen, how did a week ago we were told its not that big a deal, worst case scenario she'll have a shunt put in go so quickly and easily to "its terminal"? The doctor did her best to explain to us that our baby girl did not have a brain, either it just didn't form or a blood vessel burst and it was destroyed. She told us that she would likely be born alive but she may only live minutes, hours, days or possibly months but most of these babies don't live longer than 6 months and in some very rare cases they survive years but are severely mentally retarded. As you can imagine Darryl and I were heartbroken. The doctor then left us alone for a while to digest what we had just been told. All I could do was cry. I just sat there in disbelief. The baby we had waited so long for and already loved so much was not going to make it. My phone rang, it was my friend Kelly, I didn't answer, I didn't want to talk to anyone. The doctor came back in, she said "let me do another ultrasound, I want to check something." Some renewed hope maybe? Sadly no. She said it may not be holoprosencephaly it may be hydranencephaly but that too was also "not compatible with life" meaning fatal. Once again my heart broke. She said it didn't look like the baby had a cleft lip (a common sign of holoprosencephaly) but they wouldn't know if she had a cleft palate until after the baby was born and they could stick their fingers in her mouth to check. I asked if she could write the diagnosis down for me because all of this wasn't really registering. She said sure and that she would give me some information on both disorders and she said she would have us talk to Becky, the genetic counselor. Dr. Gainer said that she was so sorry and said that we could call her if we had any further questions once it all settled in a bit. We then met with Becky who was then throwing more medical terms at us like "trisomy 13" and asking us about our frozen embryos and would we like her to notify our fertility doctor. I couldn't even think about future children when I was sitting there trying to deal with losing one of the ones I was carrying. I asked Becky "could they be wrong?" And all she said was "even if they are wrong, there is something seriously wrong with your baby." We were given no hope, no other possible outcome. It was a fact our baby was going to die and there was nothing I could do about it. That was the hardest part. If she had already died that would be one thing but knowing that I would carry her 4 more months and then not know how long I would have her was the hardest part. Darryl and I drove home in utter shock. How had this day gone so horribly wrong? We stopped at his brother's house to drop off my car keys as I was too emotional to go pick up my car and drive home. I sat in the car while Darryl told his brother briefly what had happened. I remember my sister-in-law coming out on the front porch, I didn't know what to do. Do I wave? Do I say something? I just sat there. Eyes red from crying. We drove home. I was in an absolute daze. My neighbor texted me that they were available for New Year's Eve if we still wanted to do something. All I could do was say we couldn't do it, there was something wrong with the baby. I just laid on Darryl's lap and cried. We both didn't say anything, we just grieved for our baby girl. Finally we decided to put on a movie. Darryl brought up a whole stack and asked what I wanted to watch. I said I didn't care. He put in Sleeping Beauty. While the opening credits were rolling I said to take it out, I didn't want to watch it. I was thinking how my little girl would never watch Sleeping Beauty, she would never pretend to be Briar Rose and dance with the prince. I couldn't watch that movie knowing my little girl never would. He put in Mulan instead. I watched Mulan and was in a daze. That movie has forever been ruined for me because I will always associate it with that horrible night. Finally close to midnight my friend Kodi texted me and told me to look out the window that her husband Victor would be shooting off fireworks from the golf course. Darryl and I went in the bathroom and stood in the bathtub and watched the fireworks not saying a word. Somehow we finally went to sleep. The next day I just laid in bed in my pajamas. In a daze. Going through fits of crying like I've never cried before and moments of just staring off into space. Darryl kept trying to get me to eat something. I wasn't hungry. I figured I needed to let my family know what was going on. I called my brother George. I couldn't call my mom, she's too much of a drama queen, I couldn't deal with that right now. I called my brother and told him the news and asked him to call the rest of the family. I didn't feel like talking to all of them and going over the story over and over again. I didn't want to talk to anyone. My best friend Merrilyn called and wanted to exchange Christmas presents. I couldn't talk to her. Darryl answered the phone and explained the situation. A little later my sister called, apparently she had not yet gotten the message from George so once again wonderful Darryl stepped in and took the call. He told her what had happened. Then later still my mom called, she had heard the news from my sister, and despite the fact that I made it clear I didn't want to talk to anyone, she called anyway. Darryl took that call too. I don't know what I would have done without him. He took all the family calls and told the story over and over again. He took the call from the Relief Society President who had heard from my neighbor that something was wrong with the baby. He ran interference while I was basically catatonic and couldn't deal with life. In the afternoon Darryl's parents came over and brought us lunch. My eyes were red from crying. I couldn't eat anything. It was a very quiet lunch. His mom said "at least you won't go home empty handed, at least you'll have another baby to hold." I hated her for that. I didn't have two babies so that if something happened to one that I'd have a spare. I knew she meant well but at the time it just made me angry. How could she say something like that? She had lost a child. Did it make her any less sad when Connie died knowing that she had 5 other children? As more people began to know the fate of my child a lot of people would say things with the best intentions but at the time they just sounded stupid. I learned in these situations the only thing that is appropriate to say is "that sucks, I'm sorry." There are no words to make it any better. I decided that the best thing for me to do that day was to try and stay busy, so we decided to take down the Christmas decorations. Staying busy worked for a little while until I got to taking down the stockings. We had already bought the twins' Christmas stockings and as I took them down I realized next year I may only be putting up one. I burst into tears yet again. The hardest part was thinking of all the things my child would not get to experience. Her first Christmas, her first birthday, her first date with a boy, her first dance, her wedding day. I couldn't handle knowing that my baby girl would miss so much of life. That night I couldn't sleep. I got up and wrote one of the hardest emails I've ever had to write. I wrote an email telling my family and friends that my baby was going to die. I also researched her condition. It only scared me. I learned that she may be born with only one eye, she may be a cyclops, she may only have a single nostril. Research only made me more scared. The next day I called Dr. Gainer. I had some questions. Would she feel any pain? Would she be able to see or hear? Was her face normal? How would she die? Dr. Gainer returned my call that very day. She told me that these babies did not feel pain. That she would likely hear because the part of the brain that controls hearing is on the side and she has that part of the brain. It was unknown if she would see it just depended on if the optic tracts developed. Her face looked perfectly normal, she had 2 eyes, it didn't appear that she had a cleft lip or a single nostril. She looked perfect. She said these babies usually die peacefully. She said these babies are very calm, they cry when they are hungry or when they need a diaper change but otherwise they are very peaceful. I thanked her for calling me back. While I still felt awful, I somehow felt a little better knowing my little girl wouldn't suffer. The days and weeks and months went by. I felt it was best to keep busy. Darryl arranged for people to keep me busy and entertained. His sister took me shopping and to get a pedicure. I went to a movie with my sister-in-law. I went to lunch with friends. As time wore on I became more and more used to the fact that my child was going to die. I mentally planned her funeral. I planned what Eden would wear to her sister's funeral. We had a burial plot. I packed everything I would need at the hospital in case that was the only time I got to spend with her. Just in case, we set up her room and her crib. All I really wanted was to be able to bring her home even if it was for just one day. Then they were born and the miracles started to happen. First Georgia breathed on her own. We had been told she would likely have to be on a ventilator. Then she ate on her own. We were told she would likely never eat on her own. She was perfect. You would never know this child was given a death sentence. We enjoyed every minute we had with her knowing each moment may be our last but hoping she would hang on for a long time. We were told we could take her home. My wish had come true, I was going to be able to take her home even if it was for just one day. After we took her home is when I had the worst night of my life, she couldn't maintain her breathing, her heart rate was really low and she was very cold. I kept feeling like I was going to lose her. I wasn't ready to let her go yet. The next day we took her to the pediatrician and he eventually sent us to Primary Childrens where a few days later we were given the greatest miracle of our lives. We were told Georgia was not terminal, she had hydrocephalus and she needed a shunt. We are probably the only parents on earth who are grateful for a diagnosis of hydrocephalus. Looking back I am grateful for everything we went through. Had we not been through what we were forced to face I would not be so grateful for a disabled child. I was faced with losing her and so I will take her, problems and all. I love my sweet Georgia and I know she is a gift from God. She is my miracle. I believe she was given a choice. I believe she was told "you can go and get a body and return home or you can stay but it will be difficult." I begged her to stay. Many times during my pregnancy I begged her to stay with me. I begged her to fight. She is here now because I believe she knew how hard it was going to be for her and she chose to stay anyway. The last 3 1/2 years have been the hardest and best years of my life all rolled into one.