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One of our goals for Aaron's Butterfly Run Ottawa/Gatineau is to break the stigma around talking about miscarriage and infant loss. As part of our vision, we wanted to encourage a dialogue and raise awareness about perinatal loss. With that vision in mind, Margaret Sambol, one of the volunteers for Aaron's Butterfly Run, decided to share her personal loss story about the loss of her son Matthew. This is a letter she wrote to Matthew: Dear Matthew David Sambol, I first thought of you when I fell in love with your father in the year 2000, but it wasn’t until January 2009 that we began trying for a baby. When I had the first positive pregnancy test, we were so nervous and excited and we began to imagine what you might be like. Just a week later, I began to bleed and I felt certain I was having a miscarriage. Our family doctor booked an ultrasound to be sure. The technician asked me if I had wanted to be pregnant. “Yes, I was really excited about it,” I responded. “Well, good, because there’s still a heartbeat,” she said. I could see your little heart flickering on the screen and I was so relieved and shocked. Despite this early scare, the pregnancy seemed to be going well. I was feeling healthy and fit and never had any morning sickness. On May 22, we had our morphology ultrasound and we were delighted to see your hands and feet and spine and the flicker of your heartbeat. However, the technician said he was having trouble seeing some of your organs because you were small. Another technician was called in, but she couldn’t see either. They said we would have to come back for another ultrasound next week and we didn’t get the photo of you that we requested. We were worried, but told ourselves that it was okay that you were small. Some babies are just small, we said. Later that night, our doctor called and he told us that variations in sizes of babies happen after 35 weeks and that it is very unusual for a baby to be small at this point. He said that it could mean that you had a chromosomal disorder. Joe and I came up with a little chant – grow baby, grow baby, grow – and we would sing that to you and rub my tummy and hope that you were getting bigger. We had a follow-up ultrasound at the high-risk clinic at the Civic Hospital the next week. When we went in the technician still had a hard time seeing all the organs she needed to because of your small size. The high-risk specialist recommended that amniocentesis to determine if you did have a chromosomal disorder. I asked about treatment options and was told the only option would be an abortion. We told the doctor we didn’t want to risk losing you with an amnio if the information was not helpful for treatment and we didn’t want an abortion. We had genetic counselling at the Children’s Hospital of Eastern Ontario the following week. She told us that the doctors who had looked at our file thought the issue might be something with my placenta not feeding you properly, rather than something with your chromosomes. After leaving CHEO, we felt a little better because we at least felt that the situation had been explained to us somewhat, but there were still a lot of tears flowing that night. At our next ultrasound the following week, there was no amniotic fluid and I was put on immediate blood rest. We were also transferred to the high-risk clinic at the General Hospital. When we went home, I just tried to lie on my side as much as I could to improve the blood flow to you. At our next ultrasound at the General, they confirmed that you still had no amniotic fluid. And the technician spent a lot of time looking at blood flow within you and through the umbilical cord. The next day, we met with maternal-fetal specialist, who explained a lot of things and offered us a lot of compassion. She explained that they were seeing a lot of resistance in my umbilical artery. Normally blood flows constantly through the artery even between beats of my heart. There’s a peak and then it slowly drops off, but it never reaches the zero line, it just settles in parallel to it. With me, they were seeing blood flow during the heartbeat to a peak, but it was quickly dropping off to zero. This means that the artery is constricted so blood can only flow through when it is under pressure. It also meant that you were not getting nearly enough blood and nutrients. Your body was compensating by re-directing blood to your brain, which is critical for development. Since my placenta was providing some removal of toxins, one of the places you were redirecting blood from was your kidney. This meant that you could not produce urine and it turns out that amniotic fluid is mostly made from baby’s urine. Without amniotic fluid your lungs could not develop properly and you were also vulnerable to bumps and shocks to my body. You also did not have the reserves needed to survive birth and you were too small for the life support equipment. The doctor explained that if our baby was a normal size at 24 weeks they would take you out of me right away in a C-section. Since you were so small there was nothing they could do to save your life outside of me. In that meeting we also talked about what it would be like to give birth to a stillborn baby and that waiting until you died within might be the best option for us right now, because there was nothing that could be done to save your life. The doctor and the nurse explained that I would be induced by putting a pill next to my cervix to soften it. It would still be labour and it would hurt but they would do whatever they could to reduce the pain. I would be allowed to hold you as long as I wanted and they encouraged me to name you. I wasn’t feeling any fetal movement, so I wouldn’t know if it stopped. We decided to continue with regular ultrasounds to know when you died. As our appointment approached on Thursday, June 25, I grew more nervous. That morning I just had this sick feeling in my stomach. I kept telling Joe how worried I was that they wouldn’t see a heartbeat. When we got into the ultrasound room, my fears were confirmed. I couldn’t see your heartbeat and the technician stopped about 30 seconds in to go get a doctor. She came back with a doctor who looked at the ultrasound for about 10 seconds before saying, “I’m afraid we’re not seeing a heartbeat today.” I knew it was coming and all the same it tore my heart out to hear that. I started to bawl and I grabbed on to Joe. I was vaguely aware that the technician had cleaned the jelly off my tummy. I was crying so hard, I started to hyperventilate and the doctor had to me sit up. You were one day shy of 26 weeks gestation, which turned out to be good because they wouldn’t have let us have your body to bury if you had been born before 24 weeks. They gave us a few minutes alone to cry together and then we were moved to another room to talk to the nurse about what to expect next. We decided that we wanted to be induced right away, but the nurse told us that the labour and delivery department was completely full. We were put on the induction list and told to go home and wait for a call. They called us on Saturday morning (June 27) at 10 a.m. to get to the hospital. We were surprised by how big the room they gave us at the hospital was: the nurses called it the presidential suite. Throughout the day, they gave me doses of a pill to open my cervix which caused increasingly bad cramps. By midnight, the contractions were too intense for me to sleep. We walked around and I had a hot tub to help with the pain. At 7 a.m. I asked for something to help with the pain and they gave me a dose of a painkiller that made me feel loopy and out of it, but I could still feel the contractions, which were now about a minute apart. I asked for an epidural at 9:30 a.m., but the doctor came in and told me I was ready to deliver so I never got it. I pushed with the next contraction and I felt a large, warm mass come out. You were born at 10 a.m. on Sunday, June 28. As soon as you were born, the pain stopped immediately. The doctor declared you were a boy and handed you to me on a blue hospital pad. She warned me that since you had been deceased inside me for several days, your skull had softened. You had tiny, perfect ears and beautifully shaped light brown eyebrows. Your limbs were long – it was clear you would have been tall, but you were so skinny. Joe and I just held you and looked at you for a while. We got out the name list and chose Matthew David for you. The nurse helped us to bathe you and then you were weighed, just 200 grams, and dressed in a sweet white woolen cap and onesie. We spent several hours with you, but had to leave you at the hospital and go home alone. My arms felt empty for not holding you. My breasts made milk that you would never drink. To say that I’m sad because you died doesn’t really express how much hope I had in you. I’m sad because I wanted to see your little chest rise and fall. I’m sad because I wanted to see your little eyelids flicker and your beautiful eyes look up at me in wonder. I wanted to feel your little hand grip my finger tight. I wanted to see your daddy be utterly in love with you. I wanted to nurse you and change your diapers and get up at 2 and 4 and 6 a.m. to meet your needs. I wanted to see your first smile and your first word, your first laugh and your first step. I wanted to teach you to swim and impart our love of reading. I wanted to see you go to school, make friends and fall in love. I wanted to have pancake breakfasts together as a family every Saturday morning. I wanted to know what interested you and help you with your homework and later maybe help you choose a career. I wanted to see you graduate, get married and have babies of your own. I miss you so much and I love you beyond words. With love from your mother, Margaret Sambol July 9, 2009
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