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Stephanie
Mom to Amelia Rose
Died on March 10th, 2010, born on March 11th, 2010
Lost to Mosaicism, a rare form of Turner's Syndrome
Strattford, CT
After a rough transition from the south to New England, we found out about baby number four in June 2009. We were thrilled to welcome a new life into our family. With much anticipation and delight, I endured the rough first trimester and finally felt that I was in the fun part of pregnancy. We had found a midwife and began planning a home birth.
During my 24th week, our midwife explained that I was measuring larger then I should and she asked us to get an ultrasound to rule out twins. I was so excited about the possibility of twins, but also very aware that other problems could be the result of measuring larger. So, we waited for our ultrasound appointment.
During the appointment I told the tech that we didn't want to know the sex of the baby. She did extensive measurements and made the appropriate small talk. But I instinctively felt something was wrong. As I contacted our midwife after the appointment and she informed me that there was indeed something irregular that was found and that a level 2 ultrasound was called for. So, the panic began. The week between ultrasounds was the longest week in my life. We had some ideas of what to expect...all terrible possibilities, but until the next ultrasound, all we could do was wait.
A week later, the level 2 ultrasound confirmed that we had a baby girl who had multiple congenital anomalies that were incompatible with life. She was diagnosed with Hypoplastic Left Heart Syndrome, Cystic Hygroma, and Hydrops Fetalis. We were told right there that we had a 99% chance of her being born still and a 1% chance of her being born alive. I believe that the doctor said that she had a close to 0% chance of surviving at all. They believe she has a disorder called Turner's syndrome. This is a chromosomal disorder where a part of the 46th pair of x chromosomes is missing or damaged. It is not hereditary.
We began to arm ourselves with information in order to make the best possible choices for our daughter. Parenting her is a privledge and our focus is on making Amelia's life all about love.
During my 24th week, our midwife explained that I was measuring larger then I should and she asked us to get an ultrasound to rule out twins. I was so excited about the possibility of twins, but also very aware that other problems could be the result of measuring larger. So, we waited for our ultrasound appointment.
During the appointment I told the tech that we didn't want to know the sex of the baby. She did extensive measurements and made the appropriate small talk. But I instinctively felt something was wrong. As I contacted our midwife after the appointment and she informed me that there was indeed something irregular that was found and that a level 2 ultrasound was called for. So, the panic began. The week between ultrasounds was the longest week in my life. We had some ideas of what to expect...all terrible possibilities, but until the next ultrasound, all we could do was wait.
A week later, the level 2 ultrasound confirmed that we had a baby girl who had multiple congenital anomalies that were incompatible with life. She was diagnosed with Hypoplastic Left Heart Syndrome, Cystic Hygroma, and Hydrops Fetalis. We were told right there that we had a 99% chance of her being born still and a 1% chance of her being born alive. I believe that the doctor said that she had a close to 0% chance of surviving at all. They believe she has a disorder called Turner's syndrome. This is a chromosomal disorder where a part of the 46th pair of x chromosomes is missing or damaged. It is not hereditary.
We began to arm ourselves with information in order to make the best possible choices for our daughter. Parenting her is a privledge and our focus is on making Amelia's life all about love.
Amelia's birth:
On Tuesday, March 9th (my due date), we went to our midwife apt to have a regular check up. We had been planning on Amelia for a very long time. We knew she was not going to survive, but everyone had hope that we may see her alive. She had made it to term ~ 40 weeks. Her heartbeat was strong and showed no sings of distress. Her movements had become more infrequent and sublet, but we assumed that she was too big and cramped. My fluids leveled off in the previous weeks and I began shrinking. She was a fighter, but she was fighting against all odds.
That evening Steven and I went on a date to see the movie Shutter Island. I was so tired that I actually fell asleep during the movie and was glad to get home. As I prepared for bed, I began to feel some cramping and the fleeting thought of going into labor passed. I went to sleep, but awoke the next morning in a mood filled with anxiety and fear. I didn’t know exactly what was to come, but I sensed there we something wrong.
After breakfast, I immediately noticed Amelia had not moved. This was unusual because food almost always stimulated her. I told Steven and he suggested that I wait an hour before doing anything. I took his cue and continued on with the day. About an hour later, I felt a small flutter, almost as soft as a whisper and decided that we didn’t have to panic just yet. I began to dive into projects, but still could not shake the feeling that had been hovering around me all day. So, in the afternoon, I went upstairs to take a nap. I awoke feeling more and more anxious. I began to try and stimulate Amelia. I moved on my left side, poked and prodded her. I sang and spoke to her. I went downstairs and ate a box of Girl Scout cookies, thinking that sugar would stimulate Amelia into moving. She didn’t. I even got an ice pack from the freezer and placed it upon my belly. Nothing happened.
I yelled for Steven, who was outside cutting down trees in preparation for Amelia’s memorial garden, and told him that she had not moved since the morning and that we needed to go the midwives to hear her heartbeat. This was around 4 pm. I called and spoke to Elyse who told us to take our time and come when we could. We arranged for a neighbor to watch the kids until another friend could come. I told our children that I had not felt Amelia and that we would be going to the hospital to hear her and that she may be born this day. I also had Steven grab the suitcase (that I had packed over 3 months ago) just in case.
I yelled for Steven, who was outside cutting down trees in preparation for Amelia’s memorial garden, and told him that she had not moved since the morning and that we needed to go the midwives to hear her heartbeat. This was around 4 pm. I called and spoke to Elyse who told us to take our time and come when we could. We arranged for a neighbor to watch the kids until another friend could come. I told our children that I had not felt Amelia and that we would be going to the hospital to hear her and that she may be born this day. I also had Steven grab the suitcase (that I had packed over 3 months ago) just in case.
We drove to the office in silence ~ holding hands. It was surreal. I don’t know how Steven managed to drive at all. We arrived and the office was empty and quiet. Elyse embraced me and we went to the exam room. I described my ‘feeling’ and she listened intently and asked if we could try and hear Amelia now. She turned on the machine and placed it on my belly. The was no sound. We waited for her to move the hand device around a bit, but I KNEW. Amelia had died. I began to scream “NO, NO, NO, NO, NO!” I cried out from the depth of my soul and Steven dissolved into tears. We had always known that this was a possibility, but we chose to remain hopeful that we would get to see our baby girl alive, even if only for a moment. We prepared to have her home with us and to fill her life with ONLY LOVE until she passed away. But she had already flown. Elyse left us to grieve for a bit.
When we were ready, we began to talk about what needed to happen next. We decided to have an induction that evening. Steven began to call our families as well as the many people who would need to know.
When we were ready, we began to talk about what needed to happen next. We decided to have an induction that evening. Steven began to call our families as well as the many people who would need to know.
We both agreed that we needed to eat first and we numbly floated through the next hour until we checked into the hospital.
Upon our arrival, we were solemnly greeted and ushered upstairs to the labor and birth floor. I was so grateful that the group at ‘admitting’ must have been told about us because they never said anything congratulatory ~ just ‘Follow me please.’
Upon our arrival, we were solemnly greeted and ushered upstairs to the labor and birth floor. I was so grateful that the group at ‘admitting’ must have been told about us because they never said anything congratulatory ~ just ‘Follow me please.’
It was like walking in another’s body. I was acutely aware of each step I walked that brought me closer to the Labor and Birth floor. I remember the elevator ride and the expression on a man’s face as he exited and let us in…our eyes locked and he could tell we were devastated and saw the pain on our faces. The nurse’s desk, the rooms we walked past, the linoleum floor, the bright lights, all became a blur as we walked towards our room. The room were I would labor and giving birth to my daughter.
It began with meeting our nurse (Alyssa) and waiting on Linda our midwife. As soon as Linda, our midwife, entered the room, we embraced and I began to cry. This was not to be our joyful birth ~ the one we prayed for seeing her alive. This was going to be the birth that I had to be strong enough to get through, knowing that my baby was already gone; knowing our ‘hello’ would be overshadowed by out ‘goodbye.’
It began with meeting our nurse (Alyssa) and waiting on Linda our midwife. As soon as Linda, our midwife, entered the room, we embraced and I began to cry. This was not to be our joyful birth ~ the one we prayed for seeing her alive. This was going to be the birth that I had to be strong enough to get through, knowing that my baby was already gone; knowing our ‘hello’ would be overshadowed by out ‘goodbye.’
I decided to take a shower before receiving the misoprostil. By the time I got out of the shower, Kim C. (our acting doula) arrived. Linda told us that we should have our ultrasound to determine whether or not fluid would need to be drained from Amelia. Dr. M came, did the ultrasound and asked if she could have a second opinion before saying for certain what she thought. The second doctor came and they both saw that Amelia’s hygroma was not a concern (no needles for me). One of the things we had to plan for was the possibility that Amelia’s hygroma would need to be drained prior to her birth. There was some speculation that the hygroma’s size may cause problems for a vaginal birth if it was too large. Fortunately, this was not the case.
After the ultrasound, I received the misoprostil and we all (Steven, Kim, and I) agreed that we should try and sleep. We all began to get comfortable. Kim was next to me and Steven was in the chair, but would later be given a cot.
The room was dark except for the electric candles we had brought which gave off a small flicker of light. It was quiet and peaceful. Those moments that I lay in bed feeling the contractions slowly build were amazing. Steven had taped positive affirmation notes all around the room that I had made so during my labor I could see these powerful words and gain strength for the birth. The one I saw was taped on the bed rail. It simply said ‘open’. I kept repeating this over and over again in my head as a contraction would come.
The room was dark except for the electric candles we had brought which gave off a small flicker of light. It was quiet and peaceful. Those moments that I lay in bed feeling the contractions slowly build were amazing. Steven had taped positive affirmation notes all around the room that I had made so during my labor I could see these powerful words and gain strength for the birth. The one I saw was taped on the bed rail. It simply said ‘open’. I kept repeating this over and over again in my head as a contraction would come.
The contractions were slow and small at first, but they increased in intensity and strength through the night. All through the night, I labored by myself, in the quiet darkness. It was a beautiful time ~ a time where I was alone with Amelia…connected to her, thinking of her, and envisioning her spirit being held by God as I still held her body.
I heard another woman yell out while in the throws of her labor and felt joy for her as I imagined her seeing her baby ~ the fruit of her work (labor) ~ for the first time. Time was irrelevant in those moments. I had rested, but was unable to sleep. I would move around and talk to myself and to God about how I needed Him and His strength to get me through this birth. I would gaze at my hand as I clutched the bedrail during a contraction and breath. I imagined what Amelia would look like and which child she would resemble.
At some point, I decided that I was uncomfortable in bed and that I didn’t want to be in labor alone anymore. I awoke both Kim and Steven and told them that I didn’t want anyone else around yet (meaning a midwife). I wanted just them, music, darkness, and a birth ball. Steven was sitting on the end of the bed as I was rocking on the ball and I reached out, gripping his hands during contractions. I would lean against him and press my forehead to his. All during my labor, I was in my head thinking of my dear friend Debbie Hull (who attended all of my births in TX). I kept telling myself the things I remembered her saying to me during my labors with Aiden, Oliver, and Marin. Things like ‘down and out’ ‘relax you jaw’ ‘ open’ ‘breath down’.
At some point, I decided that I was uncomfortable in bed and that I didn’t want to be in labor alone anymore. I awoke both Kim and Steven and told them that I didn’t want anyone else around yet (meaning a midwife). I wanted just them, music, darkness, and a birth ball. Steven was sitting on the end of the bed as I was rocking on the ball and I reached out, gripping his hands during contractions. I would lean against him and press my forehead to his. All during my labor, I was in my head thinking of my dear friend Debbie Hull (who attended all of my births in TX). I kept telling myself the things I remembered her saying to me during my labors with Aiden, Oliver, and Marin. Things like ‘down and out’ ‘relax you jaw’ ‘ open’ ‘breath down’.
I was having intense upper back pain and Kim was behind me applying pressure. At some point, I remember saying that I wanted an epidural (knowing that I was in the hospital and that it was available). Everyone ignored me and kept giving me juice to drink and I never mentioned it again.
As labor increased it intensity, Linda came in and asked me if I wanted to be on the bed. I said ‘yes’ and climbed on all four and held on for dear life to the head of the bed. I remember someone saying ‘this is not BIGGER than you’ and I immediately agreed. I think that I asked (probably loudly) for someone to check me. Linda or Elyse (because by this time both were there) and said that I was almost there. I started pushing. I had been pushing a bit while on the ball, thinking that it felt good to be pushing. I remember feeling very alone, staring at the hospital wall, while everyone else was behind me. And, in all honesty, I was alone. I realized with crystalline clarity that ONLY I could do this for Amelia. ONLY I could have planned this birth for her. ONLY I could push her body into this world, while knowing that her spirit had already left me. Only me.
As labor increased it intensity, Linda came in and asked me if I wanted to be on the bed. I said ‘yes’ and climbed on all four and held on for dear life to the head of the bed. I remember someone saying ‘this is not BIGGER than you’ and I immediately agreed. I think that I asked (probably loudly) for someone to check me. Linda or Elyse (because by this time both were there) and said that I was almost there. I started pushing. I had been pushing a bit while on the ball, thinking that it felt good to be pushing. I remember feeling very alone, staring at the hospital wall, while everyone else was behind me. And, in all honesty, I was alone. I realized with crystalline clarity that ONLY I could do this for Amelia. ONLY I could have planned this birth for her. ONLY I could push her body into this world, while knowing that her spirit had already left me. Only me.
As I pushed, I remember feeling that this was going to be over soon, and that I really wanted to see my daughter’s face. I believe this gave me the strength to continue as my body was raging against me and felt as if I was going to collapse. So, I pushed and felt Amelia’s head stretch me and then pass. There was no burst of water ~ I had none. I asked if she was born, and I heard that I still had some more to do. I pushed again…this time longer. I held my breath, determined to get Amelia out as quickly as possible. Steven caught her as I birthed this precious vessel into the world that she could not survive in. At the moment of her birth, I closed my eyes and surrendered to my terrible grief. Tears and sobs racked my body as I tried to support myself on my hands and knees.
I had help turning over and said immediately, "I want my baby." Amelia was placed upon my belly and I cradled her in my arms, unaware that she was still inside the amnion. During the course of the last week, my water must have been absorbed, and due to Amelia's condition ~ not replaced. Amelia was born in the ‘caul’ {the amnion membrane that holds the amniotic fluid and the baby and usually breaks before birth}. There was no hole in the amniotic sack and after I held her, Steven had to unwrap Amelia from the protective bubble that surrounded her after she entered into this world. The only hands to ever hold Amelia were Steven's and mine.
I don't remember this, most likely due to the emotion of holding Amelia, but the midwives gave me a shot of pitocin to prevent the possibility of hemorrhage, since Amelia would not be nursing, which assists the uterus in clamping down. At this point, Steven must have taken Amelia from me to clean her up a bit and dress her. As I looked across the room, I could see Steven’s body shake with sobs.
I was feeling the shock of birth. I had no baby in my arms and the feeling of emptiness was heavy and profound. How quickly everything had changed. I had finished the journey, ended my pregnancy, and began the separation from my baby.
The room was quiet, still and just beginning to fill with the light of sunrise. I had difficulty remembering to breath; it was so terribly hard to breathe. I know there were people in the room, but I felt so totally alone. All other things faded into blur as I focused on Steven and Amelia. My baby was so far away from me at that moment and I just wanted her in my arms. And the quiet was only broken by Steven’s sobs and him saying ‘she is so beautiful.’
I could not have prepared for seeing my baby without life inside her. This was an experience that no one should have to endure. I was holding Amelia’s shell. Her body that only the day before had life inside it. Death had altered her, but she was still beautiful. As I held her, I could imagine her eyes opening and putting her to my breast to nurse. I could see how her features held a piece of each of us. She had Oliver’s chin, Steven’s ears, my eyes, Aiden’s hands, and Marin’s mouth. She was a part of all of us.
We decided that it was time for our three children to meet their sister. Steven called Patti and asked her to bring the kids to the hospital. Then he made the call to Jim, the Now I Lay Me Down To Sleep photographer. We had hoped that we would have pictures of our whole family with Amelia, but Jim had to leave just minutes before our children arrived.
We decided that it was time for our three children to meet their sister. Steven called Patti and asked her to bring the kids to the hospital. Then he made the call to Jim, the Now I Lay Me Down To Sleep photographer. We had hoped that we would have pictures of our whole family with Amelia, but Jim had to leave just minutes before our children arrived.
Steven met Patti and our children down in the hospital lobby to prepare them for seeing Amelia. I don’t know how he got through it, but he shared the news that Amelia had died and that only her body was here. He did an amazing job, because as the children walked in the room ~ they were all smiles. I honestly think they were more nervous about seeing me in a hospital (we usually have our babies at home) then they were about knowing Amelia had died…but we had prepared them as best we could throughout the months before her birth. As soon as they saw their sister, they loved her. Each of them touched, kissed, held and talked to her. My children were amazing! They showed love and curiosity and respect. She was simply their sister ~ nothing to be frightened of ~ just Amelia.
I had planned for peaceful birth, full of love and gentleness, and had achieved it. This was my final gift to her…my precious Amelia.
Stephanie blogs at Carried Through Grief
You can contact her at sdyer37@gmail.com
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1 comments:
Stephanie, after reading your blog for months, I LOVED reading your story from start to finish. Amelia was so loved, so beautiful!
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