Mom to Chloe Lee
March 31, 2011
July 8, 2011
My name is Heather. My Fiancé Travis and I were ecstatic when we found out we were expecting on October 29th 2010. We had just got our own apartment and everything seemed to be falling right into place.
My pregnancy was tough from the beginning, involving the worst morning sickness that anyone could imagine. I had all of my blood test done and everything seemed to be going very well until I got a call from my OBGYN. She had called to inform me that the AFP test I had came back positive for Spina Bifida. My heart sank. The doctor had informed me that the test could be a false positive because Spina Bifida had not run in either mine or my fiancés family. I must have cried for a week straight, but something told me inside, your baby is fine stop crying about this. When January 19th 2011 came I was excited and nervous. I was 18 weeks and we were going to find out the sex of our baby, but it was also the day we would find out the results of my positive AFP test. I just remember when they called my name I got instant butterflies. “This is what I have been waiting for”. We first went into the genetic counselors office, she explained Spina Bifida to us and what was going to happen during our appointment. Finally we were ready to find out what our little bundle of joy was going to be. Neither one of us really cared as long as he/she was healthy. We found out that we were having a girl, but we also found out that our little girl was not so healthy. Looking at that screen, my fiancé Travis and I knew there was something wrong. All I could see was a huge mass extended from her lower back. The ultrasounds tech would only tell us that it did not look normal. We were so scared, My Doctor than came in with the ultrasound tech, as well as the genetic counselor and at this point I knew it wasn’t good.
The moment we were so excited for came crashing down. After the doctor did a couple more ultrasounds he sat down and explained to us that our daughter did not have Spina Bifida instead she had an extremely rare tumor originating from her tailbone. It was called a Sacrococcygeal Teratoma. The chances of our daughter getting this were 1 in 40,000. He also informed us that she had a 50/50 chance of survival. I would have to go to Portland ME, (which was 1 hour away from my home) every week starting at 19 weeks and that I would have to be monitored very closely by a Pediatric Cardiologist once every 3 weeks. This tumor could affect the heart and could cause heart failure. We were also informed that if the tumor got too big and if her heart was straining I would have to be sent to the Children’s Hospital Of Philadelphia. Where they would have to perform surgery and remove the tumor while the baby was still in my stomach. My heart sank, and my fiancé was crying. My whole body went numb and as sad as I was it didn’t really register that she was very sick. The doctor explained all of our options, one being we could terminate the pregnancy. After feeling her kicks, and being 5 months pregnant I knew that was definitely not something I could do. She still had a 50/50 chance of being fine, and that’s what we were going to pursue.
I attended my appointments every week and got allot of pictures all in 3D and 4D. I loved this because I made a scrapbook with them. Some appointments were kind of scary because when I saw the Cardiologist I was told one week she would have fluid on her heart, and then the next time she wouldn’t. I knew she was a fighter and she would be here soon healthy and perfect. One evening in March I was working and my back started hurting really bad, when I went on my lunch break I knew something was wrong. My fiancé picked me up and rushed me to the hospital; I started having contractions every couple minutes on the way there so we decided to go to the closest hospital and didn’t go to Portland. When we arrived at CMMC they rushed me to Labor and Delivery. I was horrified that my worst night mare was coming true. I was only 26 weeks at the time. When I was telling the doctors all of my information I knew we probably should have gone to Portland. They didn’t even know what the tumor was that my daughter had, and one of the nurses even asked me to spell it for her. How could I be in a place where I am suppose to be taken care of? They didn’t even know what was wrong with my baby. I received a shot to stop my contractions, and it worked instantly. I felt very jittery but they assured me it was just the medication and that it was totally fine. I was instructed to stay out of work and be on bed rest for the rest of my pregnancy. I had an appointment in Portland one week later and everything was fine. I just needed to be carefully because the baby had already dropped and my cervix was very soft.
Thursday March 30, two weeks after I had been in the hospital for contractions; I had an appointment. This was the day I would have an ultrasound, be tested for Gestational Diabetes, and meet with the pediatric surgeon; that would remove my daughter’s tumor immediately after delivery. I never got to my last two appointments. During my ultrasound, the nurse put the camera on my belly and asked “When was the last time you felt the baby kick?” I got instant goose bumps and replied, “last night”. She then checked very quickly one more time and said, “Heather I am very sorry, there is no heart beat. It appears she got very sick, very fast”. Hearing this made me almost faint, I just remember looking at Travis and breaking down. The nurse I usually had dropped her appointments and came running in to be by my side. I thank her so much for her support and taking time out of her schedule to be there for me, even though she was busy. She than called my mom because I was shaking so badly. My mother had started screaming on the other end so loudly I could hear her across the room. I than got on the phone with her and she informed me she couldn’t drive because she was so upset but she would be having a friend drive her. Travis and I left there in a trance. We couldn’t believe what was happening. I felt as if I was on the outside looking in. When I got to Labor and Delivery, I was in tears, I still couldn’t believe what was happening, a day when I was suppose to meet with many different people and see our little girl, turned into my worst nightmare; I was about to give birth to our daughter but we couldn’t keep her. When I got into my room and got situated, the nurses knew we just needed time to try and register what was going on. I just kept telling Travis, “I do not want to do this; I don’t want to lose my belly.” I knew once she was out she was gone forever, and I was not prepared to say goodbye when I hadn’t even said Hello. I was informed that I didn’t have to start the process until I felt it was necessary and until my close family arrived. I knew I couldn’t do anything until my mother, uncle, and aunt arrived; they are my biggest support group and my fiancé and I needed them now more than ever. When I was finally ready to start the process, or as ready as I could be; I had to get an IV. After 8 attempts because my blood pressure was so high, I finally had one. I than received a pill that was placed on my cervix to help me dilate. My whole family had arrived to support us and this meant allot to us, even though I was quiet and mentally not there I couldn’t have been happier to know they were there to help us through this extremely difficult time in our lives. Once I started feeling contractions, I received an Epidural. I had back labor so badly that was the only reason I received one. All throughout the night I was on and off sick, and was receiving anxiety medication. I slept from about midnight to 6:00 am until my water broke and woke me out of a deep sleep. I knew the time I had dreaded was around the corner. I called my nurse and asked for my mom, and my aunt. I needed them in that room with my fiancé and I for support. It was time for my nurse whom was with me all night to clock out of her shift but she decided to stay with me. She was so generous.
Friday March 31st, 2011 at 7:04 am I gave birth to the most beautiful little girl. Weighing 2 pounds 8 ounces, and measuring at 14 inches long. It turned out that she hadn’t gotten sick; her umbilical cord wrapped around the tumor a couple times and cut off blood flow to her. The Sacrococcoygeal Teratoma had taken her life. We decided to name her Chloe Lee. Chloe because it is pretty and Lee, because that was my uncles first name. As unsure as I was about holding her, I knew with one look she was mine, and I needed too. Doctors wrapped her up, put a pink hat on her and let me hold her. I than handed her to my mother, once I did I started going in and out. I remember my uncle coming in and looking at her in my aunts arms, he couldn’t hold her for it was just too hard. The next thing I remember was looking over and watching my fiancé rock our beautiful daughter holding her tight with tears strolling down his face. I was shattered. I must have passed out because I than woke up a few hours later. Everyone was gone and it was sunny out. How could this day be so nice and beautiful when such a tragedy had happened? I was angry at the world, but hid it extremely well. I was informed I would be staying in the hospital for another 24 hours because I was having such bad bleeding. The doctors were worried that I was hemorrhaging. I could care less. The only thing I could think about was Chloe. If this was happening to me I couldn’t possibly care. I was so blank. All day counselors were coming in and out of my room along with nurses and family. I received 2 tiny locks of her hair, a dress the hospital put her in for pictures by a none profit organization called Now I Lay Me Down To Sleep. We also received the blanket she was wrapped in, her foot prints and a beautiful heart shaped box full of other amazing things. The Ultrasound tech that helped me the day before came to my room to visit with me. The most touching thing she could have done was come all the way over from the doctor’s office into the hospital to see me. She is the most generous person and I will never forget her. I decided I needed to leave that night after the doctors said it was ok to go. My family helped me pick up my things and get them all together to carry out. When I filled out the discharge papers I felt as if I was being torn apart all over again. I was leaving my daughter behind, and I felt horrible for that. When Travis started pushing me down the hall way in my wheelchair I started balling. I just kept trying to look back at my room. The whole way home I could not stop crying. Every bump we hit would just remind me even more of the horrific day I just had. Thank god my fiancé; as hard as I know it was for him; removed all the baby stuff from our house earlier that day. By this time it was about 10:00 pm and I was exhausted. I laid in bed and could not sleep all night.
The next few days I visited with family and close friends along with my younger brothers who are only 4 and 7. These little boys put a smile on my face and my mother knew seeing them is what I needed. Every time someone would come over I put on a front and try to act as if I was fine. They knew I wasn’t. When no one was around I would just sit on my couch ready all of the material the counselor gave me. Even though it was motivational I seemed to find the sadness in it. I went 4 whole days without eating a thing. There was no appetite. I also didn’t get any sleep, unless I took pain killers to knock me out. This went on for about a month. Once I had her Urn back because we had her cremated. I felt so much better, she was finally she should be. I am now doing better than ever. I have the loving support my family and friends right behind me. The most beautiful thing was and still is that everyone that talks about her acts as if she is a real person. I love this and it makes me feel allot better. My fiancé and I also received her footprints as a tattoo for a gift this meant the world to us. My uncle whom I gave her middle name also got a tattoo in remembrance of her. It means allot knowing she touched so many people in a way no one can explain. Allot of our friends though didn’t know how to talk to us and feel weird. We have lost a couple of our closest friends and I believe it is because they don’t know what to say. Recently I received a book called Always within; Grieving the Loss of Your Infant. It’s a book about other women that have lost their children multiple ways and I feel comforting know that I am not the only one that has gone through this and that other women know how I feel. We also did a butterfly release in her honor. Each day is different for me and I am still healing but I know now that she is looking down over us, she just wasn’t ready to be here on this cruel earth. God wanted her back to take care of her, so now she waits for her mommy and daddy. I can’t wait to see her again and to have her reunited in our arms and no longer in gods. She is my inspiration everyday.
Months later my fiance and I decided we wanted to try again. July 6, 2011 we found out we were expecting; that was short lived when I miscarried on July 8, 2011. I was 5 and a half weeks along. We were assured not to stop trying. This is my life and I am not going to let this get in my way of having the family I dream about daily.
You can contact Heather at H.email@example.com