“Whoever survives a test, whatever it may be, must tell the story. That is his duty.”
― Elie Wiesel
I made a promise. I promised that I would find the words to share the story of what has happened to me. My husband. Our family. Our friends. What has happened has happened to us all. In varying degrees, surely. But, this story happened. This story is happening. This story will continue to be told so long as I continue to find the words to share it with you. This is how I will gather my strength. I will not hide behind a veil of privacy. I am choosing to not be silent about infertility. About miscarriage. About perinatal loss. I will not stay silent. There are so many faces and I will show mine with bravery.
Here’s Leo’s story:
Leo was my 5th pregnancy. He was very much desired. Very much loved. I was feeling a bit under the weather in early May and on a whim, decided to take a pregnancy test since my cycle was a bit late. I just felt off. Something was up. I bought a test at the Walgreens adjacent to my office building. I remember one of my coworkers being in the store and I didn’t want to be caught in the pregnancy test & family planning section of the store, so I made a circle around the aisle to avoid being seen. I was able to make my purchase and dash out of the store unnoticed. My first stop was to my desk where I discreetly opened the pregnancy test package and slipped one into my pocket and off to the bathroom I went. I took the test and almost immediately I saw two lines. If you have EVER experienced infertility, you will know that time and time again, you only expect ONE thing and that’s a BFN (Big Fat Negative). I saw those two lines and my jaw dropped in disbelief. How can this be? I got pregnant without any medical intervention? I remember my hands shaking and I nervously tried to sort out what to do. I start trying to reach my husband, I believe text messages and Skype messages went along the lines of “OMFG. Oh $h!t! I’m pregnant!”
I immediately planted myself in a conference room with a telephone and my laptop and started calling around looking for a perinatologist and an OB/GYN, since I didn’t have one in the area in which we now lived. I certainly have never been to an OB, as I always avoided them to preserve my own sanity. I knew I was in trouble. I am a diabetic. I wasn’t on any medications, as I was foolishly trying to heal my own body with good food and I wanted to do it without medication. I was drinking green smoothies and cut out most all meat and animal products, I was feeling great! However, I knew I had to get on another plan. I had to get in to see a doctor immediately. I needed to be on insulin, and fast. The first week are the most critical in the development of a baby, and I know this. And I can blame myself all I want here. I can say that I had no clue that I’d ever spontaneously get pregnant the way we’re “supposed” to, because it just never happened to me. I was terrified. Perinatologist offices told me that they didn’t see patients without a referral from an OB, so I called a bunch of offices and missed out on one because of my due date being in January. And, so I took the first appointment with an OB that could see me the very next day on Friday, May 10, 2013.
My appointment was late in the afternoon and I was anxious to get the desperate help I needed. I feared judgment and criticism for foolishly being unmedicated. Because, on top of being diabetic, I have some issues with hypertension. It’s all part of an incredibly awful condition called PCOS, or more commonly now, Metabolic Syndrome. It’s a trifecta of awfulness. Being the Internet user that I am, I of course Yelped our soon-to-be OB and he had mixed reviews. We’ll call him Dr. J. He met with me along with his nurse, whom I will call Lolly (more on her later). I went ahead, despite the mixed reviews, because I needed someone NOW. And I figured if I wasn’t satisfied, I could switch out to a new doctor later. He saw me, did an exam, did a quick ultrasound, but it was too soon to see much. He took my blood pressure and checked my heart. His next move was to send me to the ER. It was late on Friday and he was not comfortable leaving me unmedicated and the fastest way to get test results and get me medication would be a trip to the ER. So, there we were, nervous and waiting. I was given insulin. I was given IV medication for high blood pressure. I was given lots and lots of fluid, because apparently I was pretty severely dehydrated. By that very next Monday, I was building a team of medical professionals that would help me along, including a great RN in the Diabetes & Pregnancy management program as well as a perinatologist and a cardiologist. I was feeling confident I had built a GREAT team to help me through this.
Because of my fertility history and recurrent pregnancy loss (RPL), I was beyond terrified. I was certain that I would miscarry at any moment just like every other time. I had never gotten as far to even see a small little embryo, yet alone the beating of a heart. I became a model patient. I was compliant with EVERYTHING. I changed to a very restrictive diet. I had become insulin dependent. I took my blood pressure medication religiously, only for it to cause terrible side effects. I did everything I could. The weeks passed and we were so far moving along as smoothly as possible. We saw growth in ultrasounds. We saw an embryo. We saw the flicker of a heartbeat. We heard a heartbeat. Each visit we grew more and more hopeful. I made it to 8 weeks. Then at around 10 weeks or so, we began our integrated testing to check for abnormalities, such as Trisomy 21 (Down Syndrome) and Trisomy 18. We had a Nuchal Translucency (NT scan) test performed, and when we received those results we were relieved to learn that we were screen negative with a 99.8% chance that our child did not have T21.
We made it to 13 weeks. We made it to the second trimester! Of course everything would be fine. It was FINALLY my time! Everyone told me so. Everyone hoped for me. We all believed. We started to believe it, we started to make plans. We started thinking of names. We started to get anxious to find out the sex of our child. My sister started talking about baby shower dates. I started poking around baby sites to look at baby gear. We made it to 14 weeks, and 15 weeks … and then to 16 weeks, 5 days. On this day, it was a Wednesday, we couldn’t wait any longer we were bubbling with excitement, that we paid for an elective ultrasound and to our delight, we were told we were having a BOY! Our little Leo. We were excited to share with our families and friends, that all special planning for unique and creative ways to announce this news flew out the window and we spent time on the telephone calling our parents from the car in the parking lot. Excitement all around.
On this very day, 16 weeks, 5 days, I went for the final part of our integrated testing. Not worried one little bit. In retrospect, when they did the ultrasound, I noticed that he was measuring about a week behind. Up until then, he had been measuring right on target. I just thought it was because it was a different ultrasound machine. First time there. I don’t know what, I just didn’t think much of it.
Then, it’s Thursday, August 8. Late in the afternoon, I get a phone call from our genetic counselor. I’m at the DMV and ask if he could call me back in 10 minutes. But, he has bad news for me. He tells me so in the very short time we did speak. I nervously awaited his return call in my car. I was already crying and trying to pull myself together to have a conversation with someone that is more than likely going to deliver some very difficult news.
He calls back after 17 minutes. He tells me he’s going to give me some numbers that are going to sound scary. My levels came back as screen positive for Down Syndrome (Trisomy 21). He explained that just because we were screen positive, it did not mean that he definitely has T21, but that we had a greater than 1 in 3 chance. He mentioned that the main reason was because my Inhibin-A level was very elevated. Where the expected range should be less than 2, mine was at 5.8. He went on to explain that elevated Inhibin-A levels also can be indicative of a placental problem that is associated with Intra Uterine Growth Restriction (IUGR), pre-eclampsia and pre-term labor. He went on to explain that an increased Inhibin-A level and its associated problems could cause increased blood pressure, of which I had just noticed that my medications weren’t working as they were before. He had a couple of options for us; We could come in on Friday or Monday. Since my birthday was on Saturday, I wanted to at least try and enjoy my weekend without more worry. So, we opted for a Monday appointment.
On Monday, August 12, 2013 we meet with the genetic counselor and she starts to explain the results and how they follow certain patterns. That although we sort of matched some of the typical patterns for T21, they also weren’t typical, especially the very elevated Inhibin-A level. We had a few options, including proceeding with a level II ultrasound, a blood test (Harmony) and/or amniocentesis. We opted for the Harmony blood test, rather than amnio, as we didn’t want to risk the life of our baby. We are then sent out to the waiting room and wait to be called back for our ultrasound. To be honest, I was sort of looking forward to see Leo again. I always enjoyed watching him move around and I was curious to see how much he had grown and to also reconfirm that it was a boy!
Sadly, I knew there was something terribly wrong the moment they began the ultrasound. There was no movement at all. I couldn’t see a heartbeat. I couldn’t see him move. He was just laying there still. I was holding my breath. I asked “is there no cardiac activity?” She says, “just a moment. when was the last time you saw your doctor?”
I started to cry. She turned on the audio and there was just silence. No heart to be heard. And I can’t shake the image of his little still body just lying there. She excuses herself and a few moments later the genetic counselor and Perinatologist (Dr. DM, who happens to be the wife of my Perinatologist, Dr. EM) come in to tell me that they want to take a second look. After they did, they just all said they were so sorry. The doctor in the room tells me that she will tell her husband the news, that she knows I am his patient. That she’ll call my OB (Dr. J) to ask what our next steps should be. The genetic counselor calls the State of California to discuss whether or not we should proceed with an Amnio anyway, but they all decided that it would be a moot point. Dr. DM comes back to tell me that Dr. J told her that they don’t handle 2nd trimester D&E procedures in their office or hospital and that I would need to be seen by someone else. I was referred to a Dr. K and they got me in the next day to start the two-day procedure. I’ll explain this process in another post.
My son left my body on Wednesday, August 15, 2013. May he forever rest in peace. And may I know that I did everything I could to keep him safe. To keep him with me and I wish I could do things differently, but I can’t. I can’t take back what happened. It just did.
We love you, Leo. You were wanted. You were dreamt of. You will always be a part of us. Forever and ever.