I have a hard time talking about this because it brings up so many emotions. When I think back to the day Haley was born, I feel nothing but joy. With Sienna, it’s more complicated than that. I had been having nightmares as the day got closer to Sienna’s birth. I kept thinking something could still go terribly wrong. I asked the OB if there was anything that could happen. She reassured me and told me that we were at the end and the baby looked great. I had 7 ultrasounds and they all showed a perfectly healthy baby. We were days away from the due date. I expressed concern over her lack of movement. They told me everything was fine. I asked if something could come up because we hadn’t done the genetics screening. Her response to that was less reassuring. She said, “If you had concerns, you should have gotten the genetics screening.” I said, “I don’t have concerns. I’m just asking if something could still come up. All my ultrasounds were normal, right?” “Your baby is measuring perfectly and everything looks great. Get some rest and get ready to meet your baby.”
Of course, now I know that my worries were warranted. It’s probable that Sienna wasn’t moving as much because she had Down syndrome and she had low muscle tone. It’s possible she was tired because she had a heart defect. That was another thing that never came up on any 1 of the 7 ultrasounds. When I tell people that I chose not to get a genetics screening, I feel judged. It’s the same puzzled, baffled, look every time I mention it. “Why wouldn’t you get the genetics screening?” Then I end up making that person feel uncomfortable when I tell them I had 4 miscarriages. Even my OB questioned me. The Ultrasound technicians questioned me. They even spent extra time looking for Down syndrome markers. None of them showed up. The truth is that the first trimester screening just looks for markers. Nothing is definitive. And if your markers are high, they want you to have an amniocentesis which has a high incident of miscarriage. I would never have agreed to it. I worried about so much the entire pregnancy and I just wanted to have the most relaxed gestation possible for this baby. I wanted to enjoy the pregnancy. But when Sienna entered my world and they told us she had Down syndrome, I immediately blamed myself. When I really think about it, I made the decision for us about the genetics screening. I told Jason that I didn’t want the screening and I explained why and he agreed. He never would have argued with me after all I had been through.
The day Sienna was born I woke up and my water had broken. It was wonderful knowing definitively that I was in labor. We called Jason’s parents and they came down to pick up Haley. We left for the hospital giddy. I was slightly emotional saying goodbye to Haley but she was so excited to be a big sister. I couldn’t wait to give her that sibling I had fought so hard for her to have.
When we got to the hospital, everything was very normal. They had to make sure my water had really broken and that I hadn’t just become incontinent. After a few hours, they admitted us. I still wasn’t having contractions so they decided to give me some pitocin to get things moving. As the contractions sped up, so did the pain and I asked for the epidural. Immediately, I felt relief but I also felt dizzy and my blood pressure dropped. The anesthesiologist had to give me a different kind of medication to get my blood pressure up. The baby’s heart rate was all over the place while this was happening.
I felt better but the baby’s heart rate still continued to bounce up and down. I was terrified. The nurses were downplaying it. They were intent on keeping me calm and they were doing a good job. As time passed, I got closer to being dilated and the nurses prepped me for delivery. Labor was fast and she came out in 4 pushes.
When she came out, she wasn’t crying. I looked at her and my first thought was that her head looked a little small and I got worried about microcephaly. My pregnancy took place during the height of the Zika virus. The nurses laughed and said she was fine but they were worried about her color and they ran her over to the UV light. Jason went with her and started to take pictures of her as they measured and weighed her.
My OB was talking to me and she started to ask me if I wanted any more children. My placenta wasn’t coming out on it’s own. It was possible they’d have to do a procedure to remove it and that could potentially lead to my uterus being removed. I knew this was a concern from the Asherman’s syndrome. I said that this was probably it for us but to do everything she could to try to avoid it. A few other doctors rushed in and did an ultrasound. To be honest, Jason and me were both nervous about this. Now looking back, I think we were so worried about me that we didn’t pay attention to what else was going on in the room.
After waiting 30 minutes, my placenta came out. They asked me if I wanted to breastfeed and I said yes. Sienna latched like a champ. She was beautiful. Jason and I gushed about how clueless we had been that she was a girl. We really thought she was a boy. We were both so happy to tell Haley she had a sister, which was what she wanted.
When I finished nursing her, I told the nurses to go get my parents from the waiting room so we could tell them. That’s when everything changed. I suddenly noticed the look on the nurse’s face that had examined Sienna and something was up. She said, “Before we get your parents, can I talk to you for a minute?”. I knew right then and there. I looked at Sienna and I knew her eyes looked almond shaped. But she was beautiful. The nurse said, “Some of Sienna’s features can be indicative of Down syndrome and we think another doctor should come take a look at her to make the call.” My heart sank. It felt like the walls were closing in on me. I wanted to run and never look back. I wanted to scream. This wasn’t happening. This had to be some sick joke. After all we went through, this couldn’t be happening. We had already been through so much. Why was God punishing me? Hadn’t I been through enough? I immediately couldn’t breathe. The nurses gave me some anti anxiety medication but it did nothing.
Another nurse came into the room. She grabbed my hand and started to tell me about her friend who had a beautiful child with Down syndrome and how much that child had enriched her life. She started to tell me how Pennsylvania was one of the best states in the country for kids with disabilities. Sienna would be approved for medicaid and that would help with medical expenses. I shut down. Her kindness helped me from completely losing it but I wasn’t processing a single word. I asked her if the other nurse could be wrong. She said that it was possible and only the doctor would know for sure. In came the doctor. He could not have been more soul crushing. He examined her and said there was no doubt that she had it and when I asked, “What does that mean?” He started to list everything negative. He said she would have developmental delays. It would take her longer to walk and talk. He said she could have heart problems. She could be more prone to Leukemia. I shut down. Jason was detached. I looked at him and he looked like he was in shock. The doctor left and I cried. The kind nurse grabbed my hand again and said, “This baby is a blessing and she is beautiful.” I asked to hold her again. She was so beautiful. This was my baby and I loved her.
It was that moment that I remembered we still had to tell my parents. They were outside waiting. How was I going to tell them this? I started to cry. The nurse grabbed my hand. I asked her if she could do it. I just couldn’t do it. When they came in and the nurse told them, they both continued to smile and they held her and said she was beautiful and that it didn’t matter. I was so relieved and touched by their reaction.
Now, I look back on this day and I’m sad. I’m sad because Sienna’s birth was one of the saddest days of my life and Haley’s birth was probably the best day of my life. I have guilt. I know now that these feelings and reactions are normal. Imagine one of the best moments of your life snatched away from you. That’s what it felt like when they told me Sienna had Down syndrome.
I’m still very emotional thinking about it. I recently wrote myself a letter on the day I received Sienna’s diagnosis.
To Haley and Sienna’s Mom,
I know what you are thinking. Somehow, this is your fault. You pushed for this baby. You fought for this pregnancy. You were scared to death that something would go wrong during labor and it has. You should have just called it a day after the fourth miscarriage.
You think that you just sentenced your family to something awful. It’s hard to see clearly now through all of the emotions you are processing, but she’s your baby. She is the same baby that has been kicking you for months, doing flips in your belly while you did yoga. This is your baby and she is the baby you are meant to have. You’re the mother God chose for her and you’re going to realize that in time.
I’m not going to sugarcoat this. It’s going to be the toughest year of your life. Get your big girl pants on and prepare to work harder than you ever have. Right now, you’re a good mom to Haley and you’ve done so much to guide and influence her in positive ways. What you are facing with Sienna is going to be your biggest challenge. You are going to grow and evolve in ways that you never dreamed possible.
You’re going to worry about Haley. You’re going to feel like a burden has been placed on her. You’re wrong. You’ve just given Haley the gift of a lifetime. She is going to learn empathy at an early age. She is going to be Sienna’s fierce protector and it’s a role that she will gravitate to all on her own. You will watch the most amazing love and bond grow between the two of them and it will move you. It will make you realize that they are meant to be with each other.
Your marriage is going to face it’s toughest year. You will handle this in different ways. You will feel isolated and alone at times, but that won’t last forever. Realize that you are both doing the best you can. There is no right or wrong way to deal with this. You will both process it at different speeds. Just know that you’ll both get there. Be patient and kind to one another.
Let yourself cry. Let yourself grieve. Don’t feel guilty. You are going to become so strong. You will protect your girls with a fierceness that will move mountains. In addition to being challenged, you will be rewarded. Sienna will change you and that’s a good thing. You will learn to take things as they come. You will appreciate the little things. You’ll stop looking too far ahead and you’ll realize that every day is a gift. You will work hard to help Sienna and it will be gratifying. You will celebrate her accomplishments. She is a warrior. She will surprise everyone. Don’t let the doctors limit her. You will meet amazing doctors but you will meet doctors that don’t see anything but Down syndrome. Trust your instincts. You know your child and you know what’s best for her.
You will be welcomed into an amazing community. It will take you time to feel like you belong there, but you will start to feel like you have another family. You will ask them for advice on some of the biggest obstacles you’ve ever faced. You’ll be rewarded with friendship and love.
One day, you’ll wake up and this won’t seem like some big nightmare that you’re recovering from. You’ll stop seeing Down syndrome and you’ll only see your baby. You will think she is perfect in every way. You’ll always be worried about her, but you’ll do everything you can to empower and strengthen her. That’s your job as her mother.
I know right now it seems like life is never going to be the same, but that’s true with every child. It gets better. Motherhood is the hardest and most rewarding job you’ll ever have. So, put those big girl pants on and buckle up for one hell of a journey.
I wish I could go back in time with the perspective I have now, so that the day of Sienna’s birth was as joyful as Haley’s had been. No matter what happens, I will always carry that guilt with me. I know it’s normal, but it still doesn’t change my feelings. I wish I could go back and yell at the doctor who painted such a negative story of life with a child with Down syndrome. Some days, I am tempted to walk into the hospital with Sienna in my arms. I want her to wave at him and say hi like she does to every person I walk by in the grocery store. I want to say to him, “You were wrong about this baby.” I want to find the nurse from the day she was born and hug her and thank her. She was right. Sienna is a blessing and she’s beautiful.
Before Sienna was conceived, we struggled for a long time. I wrote this post in August 2015. I had no idea that one year later I would get my rainbow baby and she’d rock our world…
I know some of you will judge me for sharing my story. Some people think women should handle these things stoically and not talk about them. I am already mentally combing through my Facebook list thinking about who those people are, and I have decided that I’m going to share my story anyway. If I can save just one woman some of the heartache I have been through, then opening up will be worth it. There is also something freeing about finally letting everyone know what we’ve been through. It also might help deflect that ever so often asked question, “When are you going to give Haley a sibling?”.
I will warn you that this isn’t a quick story. I tried editing this several times but this is what we went through and every detail is important. I’m sharing it so that others can learn from our experience. Maybe you have a friend whose had a few miscarriages and you don’t know how to relate. Maybe you’ve been avoiding even talking to her because you are afraid she will bring it up and you don’t know what to say. I’m here to tell you not to do that. Ask her if she needs to talk about it, because she does and you will be one of the few brave friends that lets her. Nothing you say will make it better but listening will make all of the difference. Let her know that she can be open with you and that her pain doesn’t scare you. I hope that our story helps give people a better perspective about how painful infertility and recurrent miscarriage can be. It’s an isolating journey and it doesn’t have to be. What we have been through is part of who I am now. It’s changed me and I am not hiding my story anymore.
In April 2014 (a couple of days before Easter) when Haley was just 14 months old, Jason and I learned that I was pregnant. We were shocked at first. Conceiving Haley was a long journey and I am not even going to get into that because it would be a whole other blog. Let’s just say that we did not expect to get pregnant so easily the second time around. As days went by and as we shared the news with our immediate family, I began to embrace it. I thought about how lucky Haley was going to be to have a sibling so close in age. I started to think that we might even be able to have a third child since this one came so easily. I downloaded the apps on my phone about what size the baby was that week. The due date for the baby was the day after Christmas. The symptoms set in quickly…the nausea, the headaches, and the exhaustion.
About a week after I found out I was pregnant, I woke up and had some strange cramping. I was immediately concerned. I called the Doctor and they brought us in for an early ultrasound. I was a nervous wreck thinking about a miscarriage. My anxiety was swiftly alleviated when we saw the baby and the heart beating on the ultrasound screen. I knew that this meant our odds of miscarriage had just gone from 70% to 10%. I began to truly embrace the baby and let go of all worry.
Several more weeks went by and everything still felt normal. I told a few more friends. At almost 9 weeks, I woke up and had a little bit of spotting. I called the Doctor, who immediately reassured me that first trimester bleeding was very common. She told me to come in for another ultrasound to alleviate my concerns. I called a friend who had bleeding with their second baby during the first trimester. She reassured me that it was completely normal. I remember sitting in the waiting room with Jason with my legs on his lap laughing about something Haley had done that morning. He asked me if I was worried and I said, “Not at all”. He agreed that there was nothing to worry about. Neither of us were concerned. I look back on that moment and realize how naive we were. I can picture that carefree couple sitting in the waiting room and I don’t even recognize them.
The ultrasound technician brought us back and started the sonogram. We immediately saw the baby on screen and I was reassured again. The technician pushed a few buttons and said nothing. Jason says now that he knew immediately. I was clueless. The technician wasted no time saying, “I am sorry but I am not detecting a heartbeat.” I screamed. I actually screamed out loud. I felt like I had just been sucker punched. It’s a life moment that I will never forget. She continued to go about the ultrasound. She was pushing buttons and measuring things, while I was sobbing. She left the room and came back with a Doctor who confirmed what the technician had said. The Doctor started to talk about my options, but I wasn’t listening. I was in shock. I did hear the words D&C.
I had the ultrasound on the Thursday before Memorial Day weekend. They scheduled an appointment for me to see my OB/GYN the next day. I started to research my options. I called two women I knew that had D&Cs. Both had gone on to have babies afterwards. It seemed like the quickest option to me. I just wanted it to be over. I still felt pregnant and that was a constant reminder of what I had lost. I needed to erase it, like it hadn’t happened. My other options were to wait it out and hope it happened naturally. That could take weeks. I could also take a drug called mistoprol that would bring on labor. The Doctor explained that going through labor while working towards meeting your baby was a completely different experience than going through labor to pass a miscarriage. She ended up calling me around noon that day and explaining that it wasn’t necessary for me to come to her office. We could discuss this over the phone. She had Memorial Day plans and wanted to leave the office early. I felt rushed into making a decision. I asked if there were risks with a D&C and the answer was very little. She talked about the normal risks of anesthesia and going under for any surgery. She said there were also some other very minor risks but explained that it was a common procedure and it was the quickest way for me to move on. When I hear “very minor risks”, I’m not concerned.
I had the D&C the Tuesday after Memorial Day. As I was prepping to go into the OR and while I had an IV hooked up to me, they asked me to sign some paperwork. The paperwork talked about risks associated with the procedure. The surgeon mentioned scar tissue. I asked about it and she explained that with every surgery there is a risk of scar tissue developing. They also asked me if I wanted to run tests on the fetal tissue to see if there was something genetically wrong that could have caused the miscarriage. Most of the time, genetics are responsible for miscarriages. I chose not to run any tests. If there was something genetically wrong, it wouldn’t make me feel better. It might make me even more worried for the next time we try. If there was nothing wrong, then I would have felt like I had done something to cause the miscarriage. It was a lose lose situation. The Doctor reassured me that testing wasn’t necessary. Miscarriage was common and I had a healthy little girl. This was just one of those things.
The D&C was just as I had hoped it would be. They put me to sleep. I woke up feeling crampy. I was stuck in bed for a few days. All the pregnancy symptoms were gone. It was like it had never happened, and if I tried hard enough I could actually convince myself that it hadn’t. I asked the Doctor when we could try again and she said to wait one cycle. We said we would just see what happened. We weren’t going to try again but we weren’t going to not try.
A couple months later, while we were on vacation in the 4×4 section of the Outer Banks I realized that I was a little late. I chalked it up to the fact that my cycle had to be irregular. It helped that we were miles away from a store on the middle of the beach. Of course, it never really left my mind. Every time I had a headache or felt nauseous or had cramps it all came to the front of my mind. One week later, we were home and I was still late. I took a pregnancy test and sure enough I was pregnant. I was shocked. I went online to read if it was even healthy to be pregnant again so soon and I read so much positive information. It seemed that 80% of the time women went on to have healthy pregnancies after a miscarriage. Some articles even said that you were more fertile after a D&C. I began to get optimistic again. Maybe it had all happened for a reason and this baby was meant to be.
My Mom was coming out to visit us the very next day. I picked her up from the airport, pulled over and shared the good news. We were all ecstatic. Jason had left for California that morning for a work trip. For him, the pregnancy hadn’t even sunk in. For me, I felt it physically and thought about it all the time. I was nervous. A week later, I picked Jason up from the airport and we had lunch with my Mom and Haley. We allowed ourselves to talk about it a little bit.
That evening, I had cramps and I started to bleed. We went to the ER and they ran some tests. We waited for what seemed like hours. I knew it was happening again. They gave me a sonogram and they couldn’t locate the pregnancy. The Doctor came in the room with my test results and said that my hcg (the hormone that detects pregnancy) was very low. She said it meant that this was a chemical pregnancy. A chemical pregnancy is just another term for an early miscarriage. As we walked out of the ER, I was very upset and crying. Jason was in a different place than me. He hadn’t even accepted this pregnancy as real yet. He told me that chemical pregnancies didn’t even count as miscarriages. He was trying to make me feel better, but it just made me more upset. I had been pregnant and now I wasn’t. To me, that was a loss and it didn’t matter what you called it. He just wanted me to know that it wasn’t my fault. I hadn’t done anything wrong. People can tell you that a million times but it doesn’t mean you believe them.
The truth is I will always blame myself. I question everything I did. Did I drink too much caffeine? Did I not eat well enough? Did I do too much yoga? I drank cocktails in the Outerbanks before I knew I was pregnant. Maybe I caused this. It’s an awful dialogue that goes on in your mind after a miscarriage. You can try to push the thoughts out of your head but they creep back in. Everyone reassures you. They say, “This happens all of the time. It’s more common than you think.”.
I went to my follow up appointment with my Doctor and asked her why this was continuing to happen. They had done all the normal post miscarriage blood tests and everything was normal. No thyroid issues. No blood clotting disorders. Nothing seemed abnormal. She reiterated to me that chemical pregnancies aren’t really even considered miscarriages. She said that we should wait three months and try again. So that’s what we did.
By November, I was pregnant again. I felt good about this pregnancy. We had waited the right amount of time. The symptoms came on strong. My blood work showed high hcg numbers. I told Jason over a date night. We were both over the moon. We decided to be completely optimistic. It was Christmas time. There were lots of positive things to focus on. We could enjoy the holidays and by the end of them, I would be through the first trimester. I was going to be pregnant on the due date of the first miscarriage. I would have something positive to think about when that day came around. It was a day I had been dreading.
I went to the Doctor and she was very positive. She ran some more tests and everything came back strong. All of my hormone levels were exactly as they should be. There was no reason not to be completely positive.
The Doctor said that it would probably make me feel better to get an early sonogram. We were leaving for Philadelphia for the holidays in a few days. They pushed my sonogram up a little early. She told me not to be overly concerned if they didn’t see much. It was still very early. I did not sleep a wink the night before the sonogram. A sonogram was no longer this happy moment when you got to see your baby. The happy moments I had associated with the world of ultrasounds were fading.
As the sonogram began, we saw a giant circle appear on the screen. I was immediately relieved because I knew we were seeing something. The technician pointed to it and said that it was the gestational sac. The sac is where the embryo lives. It’s the first thing you see in early pregnancy. It was measuring well but the embryo was still too small to see on the screen. If we waited a week, we would be able to see it then. It just meant that my dating was off by a week or that the baby was small. I was scared but I was completely reassured that this was normal. I was nervous but I was still wearing my rose colored glasses and I wasn’t seeing clearly. Jason was less optimistic. He was angry with the Doctors for making us come in too early. I will say this…if you are ever offered a chance to do an early ultrasound, don’t do it. Wait. Just wait until you know you will see something. Otherwise, you will worry unnecessarily and it’s torture. At least, it was for me.A couple days later, I was packing up the car for Haley and me to go to Philly. Jason was meeting us there in a few days. I went to the bathroom and noticed some spotting. How could this be happening again? I called the Doctor and was reassured that lots of women had first trimester bleeding for no reason and that it wasn’t necessarily cause for concern if it wasn’t heavy. I had just had an ultrasound so there was no sense in repeating it again. I asked if I could still go to Philadelphia and they said if something was going to happen at this stage nothing could be done to stop it. So, I decided to go for it. The drive was nerve wracking but we made it.
Once we arrived in Philly and for the next couple of days the spotting continued, but it was just spotting. I googled everything you could imagine and read dozens of positive stories about women who had bled for no reason in the first trimester and everything had been fine. I only read those stories. I ignored the negative ones. That wasn’t going to be me. Every time I went to the bathroom it was torture. It was impossible to even talk to anyone about any subject at all without thinking about this in the back of my mind. I had to hide it from most people. On top of playing a mental tennis match between Baby vs Miscarriage, I was having to smile and fake it. I froze when people asked me how I was and what was new. I give women a lot of credit that are able to pull that off. I am not one of those women. I wear my heart on my sleeve and I don’t keep secrets well. I have been known to talk when I shouldn’t, so this was hard for me. Very hard. It was pretending to be something I was not. Happy. Sadness makes people uncomfortable.
A couple days before Christmas, the cramps worsened and I felt like something was wrong. I called the Doctor and she wanted me to have another ultrasound. We were able to find a place in Philly where I could get an ultrasound and my insurance covered it. I was nervous for many reasons. I didn’t want to be there without Jason. Visions of the miscarriage ultrasound kept creeping into my head. I was also terrified of calling Jason to tell him that this had happened again. I had led us both into this positivity bubble and now I was going to have to pop it. I didn’t want to do that.
As the ultrasound began, I once again saw the gestational sac. They could not see the embryo but I was told, “That doesn’t mean anything. The sac has grown appropriately since your last ultrasound and the embryo is just too small to detect on screen.” In my heart of hearts, I knew something was wrong. I knew it in my gut but I had medical professionals telling me that everything was fine. My Doctor called me and reassured me that everything could still be fine. It was way too early to worry. She told me to think positive. I told her about the spotting, and she reiterated that many women bled during the first trimester.
I had a choice to make. I could fall apart or I could buy into this hope that everything was fine. I went back and forth between these schools of thought. At moments, I lost it and sobbed uncontrollably. Then, I would pull it together and convince myself that I was crying for no reason. We didn’t know anything. Everything could be fine. Of course, the physical pain and symptoms made it hard to be positive for too long. A couple days later, Jason arrived in Philly. It felt so good to see him and be with the one person whose emotions were probably just as mixed up as mine.
On Christmas morning, I woke up with awful contraction like cramps. The spotting was much heavier. I thought it was ending. I couldn’t believe this was happening and on Christmas morning. Here we were a day away from the original due date of the first miscarriage. Merry Christmas. I think I will always look back at pictures of this past Christmas and see how fake I had to be. Of course, having an almost two year old on Christmas morning did definitely make it easy to forget about the pain. I often think about people who go through these miscarriages with no Haley on Christmas morning to distract them from their pain. She is our everything. She is our world and with every moment it’s becoming clearer to me how fortunate we are to have her. I am blessed and grateful. I am also sad and resentful. I never realized that all of these feelings could coexist.
While all of this was going on, I was recording my waking temperature every morning. When you go through a miscarriage your waking temperature goes down. Mine still had not gone down. What was going on? I still felt pregnant. When we got back to Pittsburgh, they sent us for another ultrasound. In the waiting room, there were two other women in their second and third trimesters. One woman had a family dressed in blue and pink depending on what gender they thought the ultrasound would reveal. Here I sat in my worst nightmare. Happy pregnant families living in that happy ultrasound world. Jason and I just held hands waiting to be seen. Again, my mind raced back to that happy naive couple that sat in the waiting room before that first miscarriage. How far we had come. We were harder now. Tougher. We knew this to be a different place.
This ultrasound technician was clueless. She asked if we were excited to see our baby today. I just looked at her oddly and said, “Excited probably isn’t the word I’d use to describe what I am feeling.” She still didn’t get it. Her voice rose an octave and she acted very happy to be showing us this gestational sac that had grown proportionately since my last ultrasound. I said, “Is there a baby in the sac or is it just a sac?” “We can only see the gestational sac but it has grown the right amount and there might not be anything wrong.” I thought I was going to strangle this woman. How long did we have to go through this? This had been going on for weeks. Jason lost his patience and explained that me sitting in that waiting room with those other women was unfair. When were they going to tell us what was going on? How many ultrasounds was it going to take?
Finally, my Doctor took us back and explained that this was most likely a blighted ovum. A blighted ovum is a type of miscarriage. The embryo stopped growing early on but the gestational sac didn’t get the message and it was continuing to grow. They still weren’t willing to officially diagnose it but it was looking like a strong possibility. Finally, someone was being straight with me. She explained that the gestational sac could continue to grow for 15 weeks or more. Everything about a blighted ovum is deceiving. Your hormones continue to rise, your body gets more pregnant and the only way you know it is a blighted ovum is through ultrasound.
We went to one more ultrasound and once again we only saw the gestational sac. The tone of this ultrasound was much more somber. They had us sit in a different waiting room. The technician had the more appropriate tone and apologetic voice. We sat with the Doctor and I was once again walked through my options. We couldn’t wait for it to happen naturally. It could take weeks. I was once again given the D&C vs mistoprol conversation. I asked if there were any risks having 2 D&C procedures so close together. My Doctor’s exact answer was, “None whatsoever. Those risks are more for women who have numerous abortions.” She once again painted a picture of me curled up on the bathroom floor needing pain medication to deal with the effects of mistoprol. Why would I go the tough route when I knew how quickly things could be over with a D&C? I trusted my Doctor. She told me there were no risks. I believed her. The truth is that your first D&C carries a 6-15% chance of scar tissue. The second D&C carries a 30% chance.
I didn’t know about the scar tissue risks when I decided to move forward with the second D&C. I am going to say it again. I trusted my Doctor. I signed all the paperwork the morning of the D&C. I woke up from anesthesia and it was over again. The nightmare was ending. I could push it to the back of my mind again. It was going to be a little bit tougher this time but I could block it out. I was going to focus on Haley’s birthday and our vacation to Jamaica coming at the end of February. We were told to wait three months to try again. We didn’t know when we were going to try again. We needed time. I was so in tune with my cycle that I continued to track my temperature and take ovulation prediction tests. That was the only birth control we needed. I began more in depth fertility testing with my Doctor. All of our blood work was normal again. I had a saline ultrasound test scheduled for when we returned from Jamaica. It would be able to detect any abnormalities in my uterus that could be causing the miscarriages. All of it was going to have to wait until after vacation.
I was doing pretty well distracting myself. I had my moments of despair but Haley helped me get through it all. She is my miracle kid. I kept focusing on what was good about having one child. We could travel, and travel we did. She was my little road trip partner. We had been to Turks & Caicos, Boston, Philly, the NJ shore, and now we were headed to Jamaica plus Italy in June. Having two kids would make doing those things tough so I kept thinking of how lucky we were. I also realized how glad I was that I had quit my job to stay home with her. It’s true what they say about these years being the time of your life. I have never loved what I do so much. If I had been working through all of these miscarriages, I don’t know how I would have handled it. I don’t know how any company would feel about the amount of time I would have had to take off. Anyway, I focused on all the positives.
But I had my days. There were moments where I’d be in gymnastics class with Haley and I would realize every other Mom in the class was either pregnant or had a baby. There was the day I realized that all of the kids on our street that were Haley’s age had a new sibling on the way. Then there were all time low days like the one when my Doctor called to give me the genetics results from the second D&C. This time I had opted to go with the testing. We needed to know if there was a genetics issue causing our miscarriages. In a blighted ovum, it is almost always a genetics issue. I’ll never forget what my Doctor said when she called. Again, it’s a life moment. She said, “We have the results from your D&C genetics screening and it revealed a male karyotype with no genetic issues.” I immediately began processing. Did she just say male? Did that mean it was a boy? I didn’t want to know that. Why hadn’t she asked me if I WANTED to know that? She just came right out and said it like it meant nothing. Up until this point, these babies hadn’t been babies. They were little blobs that never formed fully and I needed to think of them that way or I would be curled up in a ball crying my eyes out, but what this Doctor said was a game changer for me. I was picturing Haley with a little brother. There was no pushing this away. I could try but the tears just kept coming. I lost it. Thankfully, Haley was sleeping but I am not sure how long I sat on the kitchen floor with the phone in my hand staring into space crying my eyes out. It could have been minutes. It could have been hours. When I gained my composure, I called my Doctor back and asked how the genetics could be normal if it was a blighted ovum. She explained that the embryo stopped growing at some point and they weren’t sure why but that it was important to continue with my testing.
Again, I focused on the vacation and Haley’s birthday. While we were in Jamaica, I slipped on a puddle and I used my wrist to break my fall and it did, literally. That put a little damper on our vacation but I’m nothing if not resilient. So, we merged on and had a great time. When we got back from vacation, I knew I had my saline ultrasound in two weeks time. My Mom came out to help take care of Haley because of my wrist and because of this test. Two days before the test I had not gotten my period. They won’t do the ultrasound unless you are at the beginning of your period. I called my Doctor and she told me to take a pregnancy test. I explained to her that it was not possible that I was pregnant. We had waited 9 days after I got a positive on the ovulation predictor test. She asked about my temperatures and I explained that they had been erratic since my D&C and that there was no real pattern to them. I did not want to take that pregnancy test, but I had no choice. Imagine my surprise when it was positive. This was the first time I had taken a pregnancy test and not been happy when it was positive. I wasn’t ready. My body wasn’t ready. The Doctor reassured me that everything would be fine. That meant nothing to me.
I told my Mom before I told Jason. I decided to wait until after she left to tell him. I was giving it time to stick. I knew how much I was already worrying and I didn’t want him to be in that boat. I wanted to spare him that as long as I possibly could. One week later, it was still sticking and I came clean. His reaction was exactly as I expected. Worry. Extreme worry. How could this have happened? I didn’t know but it didn’t change the fact that I was pregnant.
I was about 6 weeks pregnant and I woke up with cramps and spotting. I got down on my hands and knees and begged God to make it be quick. If it was going to happen again, I needed it to happen now. I needed it to be another chemical pregnancy. I couldn’t go through another D&C. I begged and begged. How much can one person take? What is your limit? I thought I had finally reached mine. Little did I know that the journey of this particular miscarriage was just beginning.
They brought me in for another ultrasound and they couldn’t see anything. My blood work revealed low hcg numbers. My Doctor said that it sounded like another chemical pregnancy. It seemed like I was losing the pregnancy on my own, but they wanted to follow my hormone levels back down to 0 to make sure my body naturally processed things. Five days later, I thought it was over. I thanked God for answering my prayers and making it end quickly.
Then, I got a phone call from the Doctor. Another life moment. “Shannon, I need you to get to the Emergency Room immediately. We think you may be having an ectopic pregnancy and that can be a life threatening situation. I have called the ER and notified them you will be arriving. They will take you back immediately when you arrive.” Why did they think that? My hcg blood tests revealed erratic numbers that had not gone down to 0. This was indicative of an ectopic pregnancy. Panic set in. One of my best friends had almost died from a ruptured tube during an ectopic pregnancy. I knew this to be a very serious situation. Friends rushed over to watch Haley and I raced to the ER where Jason met me.
They did another ultrasound. This was the most extensive ultrasound I had ever had. It lasted an hour. They looked over every inch of my reproductive organs and they found nothing. My blood work was still showing that I was pregnant and that my hcg numbers were going up. That meant the pregnancy was somewhere that it shouldn’t be, but it was still too small to see on an ultrasound. It could have been growing in a tube, an ovary, my uterus, anywhere. As it continued to grow, I was at risk. Something could rupture and I could bleed out. They wouldn’t let me leave the ER until we decided on a course of action to eliminate the pregnancy. They kept treating me with kid gloves making sure I knew that it wasn’t a viable pregnancy and that it couldn’t be saved. I knew that. I just wanted to eliminate the risk. I had a daughter at home who needed me so we needed to do whatever it was going to take to ensure that nothing happened to me.
A new OB came into our room and went over our options. At first she suggested another D&C. I gasped. “Aren’t there risks to having another D&C? This would be my third D&C within a year.” She simply shook her head and said no. Meanwhile, I now know that a third D&C would have given me a 60% chance of developing scar tissue. So her shaking her head no at me was bullshit. A D&C eliminates a pregnancy in your uterus. There was no guarantee that this pregnancy was in my uterus. She said if they did the D&C and there was no pregnancy tissue in my uterus then they would know the pregnancy was located elsewhere. And what if it was located elsewhere? Then what? They couldn’t find it on the ultrasound so surgery was not an option. I had to take a medication called methotrexate. This was a new one. I had never heard of this medicine. It is only used for ectopic pregnancies. It’s a chemotherapy drug and it can cause some awful side effects. I decided to skip the D&C and go straight to the methotrexate. The only downside is that they would never know if I had truly had an ectopic pregnancy and I would be treated as high risk with any other pregnancies.
A nurse came into the room with what looked like a hazmat suit on with the methotrexate in her hand. She injected it in my backside and placed a bandaid over the injection site. She told me that I would have to remove the bandaid and put it in a plastic bag before I put it in the trash. That’s how serious this medication is. It is no joke.
I woke up the next morning and threw up all day long. Jason had a work trip for a few days and I was alone with Haley. I felt like I had the world’s worst flu. I was in and out of the bathroom all day long. I had a fever. I could not keep anything in my stomach. On top of that, I was having awful cramps and I still felt pregnant. They had to continue to monitor my blood to track my hcg levels down to 0. All week, I went to the hospital and had blood drawn. Haley started to wake up every day and ask when we were going to the Doctor. I wanted our life back. I wanted to wake up and think about what class we were going to that day, what library was having story time, what friends were free for a play date, what we needed from the grocery store, what I was going to make for dinner, etc. I yearned for those days of simplicity. I wanted those mundane thoughts again. I didn’t want to be thinking about how sick I felt, if this pregnancy was shrinking, if something was going to rupture. I was terrified and I felt alone.
That Sunday was Easter. I could not believe a year had gone by. Last Easter, Haley was handing my in laws a basket that announced they were going to have another grandchild. This Easter, there was no grandchild but there had been 4 miscarriages. I had to put my happy face on through another holiday and pretend everything was fine.
The Monday after Easter came a call from my OB. My hcg numbers were still going up. Not good. I needed another dose of methotrexate. I had to go back to the ER and have it administered. Jason was out of town but on his way back. I dropped Haley off with our amazing neighbors. Three hours later, I was leaving the ER and headed home. They said I had to continue to get my blood drawn until the hcg levels went down to 0. Some women needed 2-3 doses of the medication. I prayed I only needed 2.
The next day my left abdomen was swollen and any time I touched it, I winced. The Doctor said to come in. She gave me an exam and was concerned because I was swollen. She sent me for another ultrasound. Nothing had ruptured. I had a cyst on my left side and that could be causing the pain or it could just be a reaction to the medication. The pain went on for several days. It was a unique pain. I had never experienced anything like it. I think it was the pregnancy breaking down.
In the midst of this, Haley and me had a trip to Orlando planned. Every other day I would get a new blood test hoping that my levels were headed in the right direction. So far, the two doses had not caused my levels to decline. They had caused a ton of pain and discomfort. Two days before we were scheduled to leave for Florida, I finally got some good news. My levels were going down. That meant I would not need a third dose of methotrexate but they had to continue to take blood tests until my levels were 0. I had a couple disagreements with my OB during this time. She made me feel like I was being a baby about the pain. She didn’t want me to go to Florida. For my mental health, I needed this trip. When I returned we would be meeting with a reproductive endocrinologist and I decided to shop for a new OB later. I had reached my limit with this group.
When we returned from our trip, Jason and I met with the Reproductive Endocrinologist. The RE had reviewed all of my files, so he never really asked me what had gone on with the miscarriages. He had read the files so he felt like he knew where we were. He was reassured by the fact that I had a living daughter. That proved that I was able to get pregnant and carry a child full term. He said it sounded like we had just had a run of bad luck and that I would be pregnant again soon. I immediately got upset and explained that I was not so concerned about getting pregnant again. I just wanted to make sure there was nothing seriously wrong with me. I told him I had a daughter and I needed to be there for her. He asked what I thought was wrong. I said I was worried about everything. I thought I could have cancer. Why was this continuing to happen? I just wanted to know that there wasn’t something seriously wrong with me. He practically laughed at me. He told me that was far from his radar and that miscarriages happen all of the time. He was confident everything was fine, but he did a physical exam and an ultrasound just to reassure me. He wrote us a dozen prescriptions for blood tests. This time Jason had to get blood drawn as well. As the tests came in, he called and reported results to me. Everything was normal. My egg quality and quantity numbers were high. Jason’s tests were all perfect.
Next up was something called an HSG. It’s basically an x-ray of your uterus and fallopian tubes. They inject dye through everything to make sure there are no blockages. A blockage could lead to another ectopic pregnancy. If I had any fibroids or abnormalities in my uterus, they would show up as well. The test was uncomfortable and as soon as he was done, he had me look at the pictures on the screen. He pointed to my uterus. It had white lines all over it that looked like veins. He pointed to those white lines and said, “These are areas that the dye couldn’t get through. This is scar tissue and it’s in your uterus. It’s called Asherman’s Syndrome. We are going to have to remove all of that. We want your uterus looking as pretty as possible for a new baby.” I felt like he was patronizing me. I asked, “Is this why I keep having miscarriages?” and he said it was possible. I asked how it got there and how we would remove it. He said, “I am going to send you back to your OB to operate and remove the scar tissue. It’s an outpatient procedure and it’s really no big deal.” My mind was racing. I couldn’t wait to get out of there. Before I left, he turned to me and said, “Aren’t you relieved? I told you it wasn’t cancer.” He left the room and I burst into tears.
At this stage, I was completely untrusting of Doctors. Why had this RE been all smiles as he delivered the news? I googled Asherman’s Syndrome. I had never heard of it before. As I read, I immediately began to realize the gravity of the situation. It was in fact a big deal. Women develop scar tissue in their uterus from overly aggressive D&C procedures. The odds of scar tissue developing increase every time you have a D&C. The first D&C carries a 6-15% chance, the second D&C a 30% chance and a third D&C a 60% chance. Yet, as I sat in front of that computer it was the first time I was hearing these statistics or had even heard of Asherman’s Syndrome. Why had every Doctor I asked about risks never mentioned this? These percentages are high to me. Had they been quoted to me prior to my first D&C, I might not have moved forward with it. It’s unfortunate, but the Doctors are either uneducated or ignorant. I am writing every Doctor a letter who told me there were no risks with D&C procedures to let them know that they are wrong. It’s a business like anything else in the world. Do you think Doctors make more money from doing a procedure or writing a prescription? The more I read, the more I became consumed with guilt. I had been so stupid, so trusting. I made a decision based on it being easier for me. I wanted the pain to end as quickly as possible and I chose the easy way out. This was my worst nightmare come true. I had been asking myself after every miscarriage if it was somehow my fault and now I had my answer. It was my fault.
Some people have said to me, “Weren’t you happy that you finally had a reason or an answer for everything?”. If I say no then I sound like I am wallowing or ungrateful. I am relieved that this COULD be the answer, but it’s much more complicated than that. I joined a support group through the National Asherman’s Association. Hundreds of women from around the world formed this support group. They have a Yahoo Message Board where you can post questions. They have a database of files that include a list of Doctors they recommend, sample letters to write to the Doctors who may have caused your Asherman’s, methods of treating Asherman’s, risks of getting pregnant after Asherman’s, etc. It was the best source of information I could have found. There are only a few Doctors on what they call the A List. Any Doctor can treat Asherman’s but it doesn’t mean that they should. If I went to an unskilled surgeon, the scar tissue could grow worse. I needed to go to a surgeon who had experience using microscissors. After the scar tissue was removed with the microscissors, I would need a balloon catheter placed in my uterus as it healed. It would keep the walls of my uterus from sticking together and prevent more scar tissue from forming. They would do further testing at that point to see if the scar tissue had grown back. If it had, I would need to repeat surgery. There were women on this message board who had been operated on three times. It was crucial to start with the right Doctor. As I threw myself into research and read details about the best plan of action for treating this, I learned that there were no Doctors in Pittsburgh on the A List. The best Doctor was in Newton, Massachusetts. There was also a Doctor in Philadelphia whose name kept popping up in success stories; Dr. Freedman. I knew my insurance covered a diagnosis of infertility. I was not sure if it would cover my surgery, but I soon learned this was a medically necessary surgery. As I was talking to my insurance company, I explained that no Doctor in Pittsburgh was qualified to do the surgery. I was worried because my insurance company was locally based but someone was looking out for me that day because I soon learned that Dr. Freedman was an approved Provider. I was ecstatic. I made an appointment with him in July.
In the mean time, my current RE wanted to see us and go over our results. When we sat down, he went over all our blood work again with us and explained that everything was normal. As he pulled the HSG up on the computer screen, he started to discuss my case of Asherman’s Syndrome. I asked if it was caused by a D&C and he said there was no way of knowing that. He deflected and recommended that I go back to my OB to perform the surgery. You see, my OB gave him referrals and he was protecting her. I asked if she had experience and he said he was certain someone at her practice had experience with it and that it really wasn’t that big of a deal. I told him that I was not going back to my OB. I told him that I had not been informed of the risks that came with D&C procedures. He told me that what I was dealing with was very rare and most of the time there are little to no risks with D&C procedures. Here I was sitting in front of another ignorant Doctor. This same Doctor told me my chemical pregnancies were not miscarriages. This same Doctor had been minimizing every single one of my concerns and continued to tell me that this was not a big deal. We walked out of that office knowing that was the last we would see of him. See you later, Dr. At Least It’s Not Cancer.
My frustration with the medical community at this point was overwhelming. I poured over more information about Dr. Freedman. How much success had he had? What did women in my group have to say about him? At this point, I was seeing a counselor. She told me that I was going to have to choose to trust a Doctor again. I knew that would be a challenge but she pointed out to me that I had done everything right. I had done research and I had talked to women who had been through it. This Doctor had the success rates. I had to let go of my guilt and trust myself again.
I could barely sleep the night before the appointment. I wanted it to work out so badly. It didn’t help that I was traveling across the state to go on this appointment. My Mom came with me. Dr. Freedman was a very serious Doctor, which was a relief. He didn’t minimize Asherman’s Syndrome. He explained why he was recommended as an A List Doctor, but he wasn’t bragging. He was grounded. Women from all over the country had come to see him. He explained his technique and treatment methods. Then he did something no other Doctor has ever done before. He picked up my file and went through everything with me. He asked me for details on my entire medical history and wanted to know about each miscarriage from the beginning. He confirmed my suspicions that it sounded like the first D&C had caused all subsequent miscarriages. There was no way of proving that. He explained how unusual it was to have a blighted ovum with normal genetics, unless the embryo had implanted somewhere where it wasn’t getting enough oxygen and nutrients, somewhere near scar tissue. Scar tissue could be responsible for all of it; the blighted ovum, the ectopic pregnancy, the chemical pregnancy. The original miscarriage could have just been bad luck. I still can’t help but feel responsible. For the rest of my life, I will tell women who are deciding what to do about a miscarriage to consider other options before a D&C. I only wish someone had been there to say that to me. I wish it had been my Doctor, but she was in a rush to get out of the office early that day to start her Memorial Day weekend. Of course, it wasn’t just her. It was every other Doctor I continued to question about risks. I am here to tell you that there are risks and you deserve to know that. For more information about the risks and Asherman’s Syndrome, please visit http://www.ashermans.org
My surgery was August 6 and Dr. Freedman believes he removed all of the scar tissue. The balloon catheter was removed one week later. I will be taking hormones and antibiotics for the next month. Then, we will have a follow up procedure to make sure none of the scar tissue has grown back. If it has not grown back, we can start trying for a baby again. The surgery was the biggest question mark of all. He had no idea how extensive the scarring was until he operated. It was a mild case. Dr. Freedman is very optimistic about our future. I am one of the lucky ones. The stories I hear in my support group are heartbreaking.
As for me, I have no expectations about the future. I am cautiously optimistic. It feels good to finally come clean with all of this. I feel like I have been through a war this year, but when someone asks me how I am or what is new, I have to lie. I look back at pictures over the last year and in at least half of them, I am pregnant.
I wanted to share my story because I want people to know how difficult it can be to go through a miscarriage. If someone in your life wants to talk about their experience with miscarriage, listen. Let them talk. Ask them how they are coping. I have been fortunate enough to have the support of some amazing family members and friends. I have also experienced distance from certain family members and friends because they are so uncomfortable about what I have been through. I wish that didn’t have to happen. It’s isolating enough going through this but it doesn’t have to be. I’m hoping this blog helps open some eyes. When someone goes through an illness, a divorce or loses someone, we are there for them. This should be no different.