Saturday, April 10, 2010

Sydney Grace's Story

Back when we first found out about Sydney Grace, my sister said I should start a blog. I have never been into blogging, facebook, or anything like it before. I never started the blog and it was not until after Sydney was born did our friend Hilary start this one. Since Sydney passed, I have found it very good for me to write down what I am going through. I decided to go back from the very beginning and write down Sydney Grace's story.

Day 1
The day our lives changed forever….
It was August 19, 2009, and I was 19 weeks pregnant. I had my ultrasound scheduled for 9:00am. Joel met me at the doctor’s office. I remember waiting and the only thing on my mind was whether or not we would find out the sex of the baby. I so wanted a girl. We already had Rafe and two nephews, so everyone was ready for a girl again. I had myself convinced it was going to be a boy.

They called us back after not having to wait very long. When we walked into the room I recognized the technician as a lady from the island and my church. She started the ultrasound. At first everything seemed fine. She was doing all the measurements and said she was a little small. Sydney was measuring two weeks too small. She did not seem concerned about it. When I had my 8 week ultrasound, Sydney measured 4 days too small. I questioned the doctor about this. He said it was perfectly normal and he was not going to change my due date. We later found out that one of the signs, of Trisomy 18, is the baby measuring small.

The technician had asked at the beginning of the ultrasound if Rafe was excited and what he wanted, a sister or a brother. From the time we found out I was pregnant, Rafe wanted a sister. She could not tell for sure if Sydney was a girl, but said Rafe may have gotten his wish.

Things started getting worrisome when the technician started looking at Sydney Grace’s brain. She said Sydney had two cysts on her brain. She said more babies have these than you realize and they were more than likely harmless, but we would probably be sent to a specialist just to make sure. The rest of the ultrasound went ok until the very end. She could never get good images of Sydney’s heart. She tried for several minutes, trying from several angles and trying to get Sydney to turn around. Finally she stopped, but never said anything was wrong. She went to go get the doctor like normal to go over everything with us. She said we might have to wait awhile for the doctor since she was seeing another patient.

Surprisingly, the doctor came in quick. She was very nice and caring. She started going over the ultrasound pictures. At first everything seemed fine, then everything went wrong. She got to the pictures of my placenta. She said it had things called placental lakes in them. They showed up on the ultrasound as dark spots on my placenta. Next she started looking at the shots of her heart. She stopped and starting pointing at the screen. She said Sydney had a hypoplastic right ventricle. What does that mean? Her right ventricle is not formed. At this point I started crying. I don’t think it hit Joel yet. She continued to talk about her brain and the cysts. I knew it was bad. The doctor said she was very concerned. Joel asked what that meant. She said it was more than likely some chromosomal defect. Like Down Syndrome, we asked. She said yes, but there were other chromosomal problems that were possible. She referred us to a specialist who would be able to help us.

I was upset, but Joel was very positive. He knew something was wrong, but he knew we could handle it. He said God would not give us anything we could not handle. If Sydney had Down Syndrome, then it was our job to help her reach her full potential. He was looking forward to having this special child. That night as we talked to our family, my sister told me about a lady that she worked with. This lady has a special needs child. The lady says a lot of people ask “Why us” to God, but she realized one day, “Why not us.” When she said this to me, I realized God chose us for a reason. We did not know the reason, but we trusted in God. Why not us?

The next day we had an appointment with the specialist. They called me at 9 am in the morning and asked that we come in that day. I remember thinking they were being so nice because they knew school started in a few days and I needed to be seen before I started teaching. I was wrong. They needed me to come in that day because something was really wrong and I had choices to make…


We went to a specialist in Jacksonville on August 20, 2009. While we were waiting to see the doctor, I noticed a sign they had posted in the waiting room. It asked for patience while waiting reminding us that some women may be getting bad news even the death of their child. For some reason it did not occur to me that the sign was talking about us.

When we were finally called back, we saw a technician that took measurements and told us we were having a girl. When she left, a genetic counselor came in. She was extremely nice and caring, but she started talking about Trisomy 18. I had absolutely no clue what she was talking about. I had never heard of it before. I did know that trisomy 21 was Down syndrome, so I thought it might be something very similar. Then she said the words that I was not prepared for, “Trisomy 18 is Fatal in the majority of cases.” I was completely shocked. I did not even cry. It was like she was talking about someone else. Not me and my baby. Then the doctor came in. He did another ultrasound and starting pointing out why he thought Sydney Grace had T18. He talked about the cysts on her brain and how her brain was not formed right in the front. He talked about her heart and how the only thing that would fix it was a transplant. He talked about her fingers and how her pinky and index fingers overlap the others. He talked about my placenta and how it was shaped different. He said normal placentas were shaped kind of like a sheet cake and my placenta was like a cupcake shape. Still this whole time I did not cry.

Next the doctor told me my choices. The reason I got to see the doctor so fast was because he wanted me to have the choice to terminate if I wanted to. In North Carolina, I believe he said I had until 20 weeks and 6 days to have a late term abortion. I was 19 weeks and 1 day. Of course he did not try to persuade me, he was very caring. He just wanted me to have the option if that was what we decided. He recommended an amino to be sure. We decided to have the amino. Let me say it HURT. They told me it would feel like cramps. I was thinking menstrual cramps. I thought no big deal. Not so. After it was over, I told them it felt like someone was tying my intestines in knots. Of course I could not move and all I wanted to do was to jump off the table. This is when I started crying. Crying from physical pain and crying that I was going through this. I was looking at the ceiling during the amnio thinking, I can’t believe this is happening. I can’t believe it was happening to me. I hear about other women with difficult pregnancies or miscarriages, but I never thought I would be one of them. We found out a week later that Sydney Grace had full Trisomy 18, meaning she had it in every cell of her body. It is possible to have mosaic trisomy 18 were it is not present in every cell.

I could not believe having an abortion was even an option for me. That was something I definitely never thought I would ever have to think about. Of course, it was not something I thought about long. How could I ever decide to kill my child? It was not my decision when Sydney Grace would die. It was God’s only.

Now I am going to share something that I am ashamed to say. When we did the amnio the doctor told me that they bring a small risk of a miscarriage. I could not make the decision to abort my child but I was hoping I would have a miscarriage. That first day, I could not imagine how I was going to get through this pregnancy. I just wanted it to be over. The doctor went through what could happen through the rest of my pregnancy. There was a good chance I could still miscarry. If I did not miscarry, I had a good chance of going into preterm labor, probably between 28-32 weeks. If Sydney was still alive during labor she would probably die during childbirth. And if she actually made it through the delivery she would only live for minutes, not even hours.

Knowing all this, probably for the first week I wanted to miscarry. I was really feeling sorry for myself. I was the one that had to carry this baby that was not going to survive. I had to feel her move inside me. I had to be the one that would be approached by strangers and answer questions about the sex of the baby or when I was due. I was the one that had to live with this 24/7, without a break. All I had to do was look down at my growing belly to be reminded. I never could escape from the pain of it all. I wanted it over.

Probably about a week later it occurred to me. I was the lucky one. I was lucky because I was the one that got to feel her move inside me. I was the one that got to feel her grow inside me. I was the one that got to be with her 24/7. I was definitely the lucky one. Others in my family would only be able to experience Sydney Grace for minutes (so we thought) but I would be able to experience her for months. What a blessing!

Throughout the rest of my pregnancy, I had my ups and downs. It was still very hard. One thing that really helped me get through it was my work. When I first found out about Sydney having T18, I was really close to calling my principal and saying I was sorry but I would not be able to work this year. I just did not see how I would do it. I was so afraid I would have a breakdown in front of my students. When the first day of school came, I made myself get up and go. I cried all the way to school, but when I got there and met my students, I knew I had made the right choice. Being at school was an escape from my pain. For those 8 hours a day I was able to focus on my kids and math.

The last 10 weeks of my pregnancy were the hardest….

When I reached week 28, I was still pregnant. I just knew I would deliver very soon. I had that range of week 28-32 in my head. I was ready as far as having everything planned but not ready emotionally (I don’t think I was ever ready for that.) When we first found out, I went into action. I wanted everything planned out. I wanted Sydney Grace to have a christening gown, some jewelry, and other things I would have of hers once she was gone. We talked to the doctors and expressed our wishes of doing a perinatal hospice for Sydney Grace. We talked to the funeral home and had her service planned. I knew once Sydney Grace was born, I would not be able to make many decisions.

Week 28 went by, then 29, 30, 31, and 32. Still no labor. At this point I starting to have what I believe to be panic attacks. I had one at school one day. My heart started beating fast. I felt light headed. My arms and legs felt like jelly. I did not know what was wrong. I called my doctor’s office and was told to go directly to the hospital. Nothing was wrong with Sydney or me. While at the hospital, I had a small breakdown. I just could not handle this anymore. I was so ready for this pain to be over. I was at the point in my pregnancy that I thought Sydney would have been born. I never imagined she would make it this long.

Since I had made it this far, I was given the option to be induced at 37 weeks. The problem, 37 weeks was December 23. I definitely did not want to be induced two days before Christmas. After having my small breakdown in November, I wanted to go ahead and be induced as soon as possible. At 34 weeks, if the doctors would have allowed it, I would have done it then, or so I thought. They would not for a number of reasons. The soonest would be 36 weeks. I actually went to the hospital on Dec. 14 with false labor. I was so upset during this, that the doctor offered to induce me that night, a few days before 36 weeks.

Now it was decision time. Just days before, I had decided to let go and let God be in control. My biggest fear was that Sydney Grace would be born and die during Christmas. I did not want that for Rafe. I wanted his Christmas to be the best. When the doctor offered to induce me I was back to wanting it to be over. I just knew that if I was induced the outcome would not be any different than if Sydney came on her own time. I was so wrong. I struggled that night. I wanted someone to tell me what to do. No one would. They said it was my decision. Then Joel said something that made me realize I could never decide to induce just for the sake of wanting it to be over. He said, “He wanted Sydney Grace with us as long as possible, if that meant two hours, two days, or two weeks.” He was not ready to give her up. I was not either. I wanted the pain to be over, not realizing if I decided to induce, the pain would probably be worse down the road. I would always have the “what ifs.” I went home that night content with my decision. I was blessed to have Sydney as long as possible.

I went back to the hospital again on December 30 thinking I could be in labor again. I was not. I had so many Braxton hicks contractions during this pregnancy. Once again, it was offered for me to be induced. Once again, I said no.

When I went to the doctor on January 5, the doctor strongly suggested that I get induced. This time it was because my blood pressure was too high. I was at 39 weeks and because of my blood pressure they did not want to take any risk to my health. I was admitted on the night of January 6. They started softening my cervix and were to give me drugs to induce labor the next morning. That did not have to happen.

In the middle of the night, I woke up with contractions, but they were not registering on the monitor, so they kept me on the medicine to soften by cervix. They continued for a few hours. Then my water broke and I was 3 cm. Forty-five minutes later I was 4 cm and ten minutes later Sydney Grace was born at 5:11am. Sydney Grace came so fast that the doctor did not even make it in on time. Two nurses finished delivering her. She was Frank Breach, which means her butt came out first, then her feet. I was trying not to push as the nurses were trying to get everything ready, but I could not help it. She basically just fell out. The nurses did help get her head out last. The first thing I asked was if she was alive. One nurse said, “I am sorry, but no.” I just started crying. I knew this was a very likely possibility, but I so badly want to see her alive if for only minutes. It seemed like an eternity, but probably only 15 seconds later, the nurse said she believed she heard a faint heartbeat. It was very week and irregular, but continued to get stronger and stronger as the hours went on.

On that first day, I remember counting the hours that she was alive. We never imagined she would live more than a few minutes with her heart condition. She kept getting stronger and stronger. She continued until day five. I really believe up until this point in my life, I had never experienced a day any worse than that day. We took her to Greenville to a pediatric cardiologist to determine if her fetal diagnosis was correct. Images of her heart would be greatly improved from those of when she was inside me. The doctor was very wonderful, but he confirmed that Sydney Grace’s original diagnosis was correct. One thing we found out was that along with her fatal heart defect, she had another defect that was keeping her alive. A ductus that closes after babies are born had not yet closed. This usually closes after a few hours or at most, a few days after birth. Sydney’s was extra large. This was what was keeping her heart from having to take over getting blood to the lungs. The ductus (PDA) was basically doing the heart’s job. We really did not have any idea as to when Sydney would pass. It could be on the car ride home or six months from now. After meeting with the doctor, we met with a genetic counselor. It was then that Sydney had her first apnea episode. I looked down and she was completely blue and stopped breathing. The doctor rushed back in and said her heart rate was down drastically. He could no longer hear the murmur (which indicated the ductus was closing or closed). He took another look at her heart with an ultrasound and it was back open. I had never been so scared in my life. The rest of the day I was so down. I was in this deep depression and had no idea how to get out of it. I believe Joel was really scared for me. I did not know how we could move forward. Knowing that she could die at any second or be with us for months.

The next day Sydney Grace had another episode, this time about 20 minutes. We thought it was the end. We called everyone to the hospital thinking she could not last much longer. That night the episodes continued to get worse and worse. Once again we called everyone in the middle of the night, thinking she would not make it to the morning. Once again she fooled us. Without being too graphic, let me just say, no one should ever have to witness their child go through these episodes, with some lasting more than 30 minutes. This was the first time, Joel and I, really started questioning God. We had accepted that we would not have Sydney Grace long. We were just so thankful to have her for any amount of time. We were now starting to understand why Sydney Grace had been placed on this earth. We were amazed at the number of people being brought to their knees in prayer because of Sydney. For the life of us though, we could not understand why Sydney had to suffer so much. Watching her struggle for a breath was heartbreaking. Why did she have to go through so much? I am not sure I will ever know.

Once again, it was time to pray for strength to be there for Sydney Grace during these times. As Joel said, “this was our new normal.” Having to deal with these episodes was sadly something we got used to. Obviously, it was not fun, but we were not so scared every time thinking she was about to die. Sydney Grace lived for 15 more days after her very first episode. We were able to bring her home. We were able to share her with probably close to 200 people. She was truly a blessing to so many people.

When Sydney Grace passed away, I am so thankful that she did not struggle. As I held her, and we looked at each other, her breathing just starting slowing down until she took her last breath at 2:07 am on January 27, 2010. It was just Sydney Grace, Joel and I in the room. It was so peaceful. I know this is going to sound weird, but it was a beautiful experience. I was privileged to be this child’s mother. God chose me. What an honor! She was inside me for 9 months. She came into this world with just Joel and me and two nurses. She left this world with just Joel and me with her.

Sydney Grace has taught me so much. One, I am much stronger than I, or anyone else, thought I would ever be. Because of her, I have seen Joel in a whole new light. He is such a good man. I am lucky to have him. She taught all of us what a miracle really is. It is the love of God.

Thank you, Sydney Grace, for being my daughter