Tuesday, December 31, 2013

Tell-All Tuesday: Grace's Story Part 2

Baby number two was due to make a debut on March 11, 2014. While I had my worries and questions about how we were going to manage a toddler and a new baby, especially in our cozy little two bedroom home, I was so excited to be giving Ellie a little sibling. I kept imagining what she would be like with a tiny newborn. I loved asking her where the baby was and seeing her excitedly point to my tummy and say baby, then point to her own little belly and say baby again. I'm pretty sure at that point she was just under the impression that everyone carried babies in their tummies. To add to all of the excitement and things to look forward to, I had two of my friends with toddlers that are Ellie's little buddies embarking on the same "have a little sibling" journey as me, one with a due date only 5 days ahead of mine. Life was pretty darn awesome.

I had some blood drawn at my 16 week appointment as another part of the sequential testing that can be done for chromosomal abnormalities and other birth defects. If you are interested in what the tests are and what they look for, there is some good information on them here: sequential testing . The decision on whether or not to participate in these screenings is a very personal one, and Kevin and I knew that it was the right decision for us just as it had been with our first pregnancy. Just like everything had gone smoothly through these tests with Ellie, I assumed that it would be the same this time around, especially after passing both the first blood test and ultrasound portion.

It was Tuesday, October 1st. Ellie had just been snugly buckled in to the back of my car. I have a little routine that I have always done with her when I put her in her seat where I buckle her up, give her a kiss and tell her I love her and that I will see her soon. She now often puckers in preparation for the kiss as I am still fumbling with her clasps, and if you have ever seen her little pucker, you can understand why I can't help but giggle a little. As I smiled my way around the back of my car to the driver's side my phone rang. I thought it was a little odd that my doctor was calling me, but for some reason the thought that something might not have gone right with my tests hadn't even crossed my mind. In fact I had completely forgotten about them altogether and just assumed that the call would be about a schedule change for the next appointment I had made. The second I heard my doctor's tone in her voice on the other end, I knew something wasn't right. She proceeded to tell me that she was very sorry to have to tell me this, and that she had been rooting for me to have a perfectly normal pregnancy this time around after what I had gone through in the beginning of my first pregnancy with severe pain and a surgery, as well as going into labor a month early, but that I had not passed this second portion of the sequential testing. The tears began to swell in my eyes and a large lump formed in my throat, but I was somehow able to hold it together for the rest of our conversation. She informed me that my results were showing that there was a 1 in 150 chance that my baby had Down Syndrome. This was considered "failing" or getting a "screen positive" and she said that genetic counseling, where I would be offered more information and further testing, was highly recommended. She kept telling me to try and stay positive and focus on the fact that 149 times out of the 150, there is nothing wrong. That there are often false positives that can occur from natural causes, and that this was most likely the case. It may have been my pregnancy hormones, but for some reason all I could focus on was that one. What if I were that one? Why did this have to be happening to me? I called Kevin and attempted to relay the information through my choking gasps and tears, and he was home from work and with me in no time. He did such a good job of helping me stay positive about the whole thing. His world had just been turned upside down in an instant as well, and yet he was still my rock. He even called the genetics specialists in Eugene to make the appointment for me as I sobbed uncontrollably in bed. I got the phone call on Tuesday, October 1st, and we had an appointment with the specialists scheduled for Friday the 4th. To say that the next couple of days felt like an eternity of torture would be an understatement. Little did I know that I would soon be wishing I could go back to this time. Back to the unknown. Back to still holding on to that little bit of hope that this was all just a big mistake, like a horrific nightmare that I could sweat out, breathe through, and be done with.

By the time we ended up in the doctor's office lobby in Eugene I had become relatively optimistic. The 1 in 150 odds, while considered enough to seek further testing by doctors, did not seem that great to me. I filled out a number of forms and papers before being called back. We initially met with a genetics counselor where we engaged in some small talk, were given some information and discussed our options a little. She informed us that we would be doing a routine in-depth ultrasound that would check for certain markers of Down Syndrome, and we decided that we should just wait to discuss anything further until we had completed this portion of the appointment. A sweet, middle-aged woman performed the ultrasound as Kevin sat in a chair by my side, holding my hand. She let us know there was a heartbeat and for that moment, I was relieved. The rest of the exam took a really, really long time, with what seemed to be repetitive pictures and measurements being taken. She didn't say a word the entire time, except for when she told us to look away (we had told them that we were waiting to find out the sex of the baby until it was born) and while I knew this couldn't be a good thing, and the images on the screen didn't even look right in my own eyes, I still felt hope. Or was it denial? I told myself I wasn't a doctor, so maybe I just didn't know what I was looking at, and she was just doing a thorough job and concentrating. After what seemed like hours of holding my breath and a million thudding heartbeats in my throat, she finally spoke again. She wanted to confirm our due date, as the baby was measuring about a week behind what we had thought. My heart sank a little. She then spoke the words that I'm sure she was dreading speaking the entire time we had all been in silence. She was so sorry, but things didn't look good at all, and she was going to go get the doctor who would look at the baby himself as well as the results she had gathered. I completely lost it. I had no words, just tears. I remember looking over at Kevin as she left the room and seeing sheer fear and devastation when our eyes met. It was a strange sensation seeing something like this from him, something usually so foreign to those strong, comforting eyes I know so well.

The doctor was a large man, he was very tall and had a kind face. I could see the sympathy in his eyes as he entered the room. He performed the ultrasound himself in silence for a short time. I couldn't look at him or the screen. I just stared off into nothing, tears falling out of the outer corners of my eyes. He proceeded to explain various issues with our baby in medical terms I did not understand. What did come across clearly, however, were the words that no expecting parents should ever have to hear: "not compatible with life." I felt like I couldn't breathe and was certain I was going to vomit. We decided to proceed with an amniocentesis since the baby was not going to make it anyway, and it would tell us what exactly went wrong as well as whether or not there might be any hereditary issues that would cause problems with future pregnancies. As if being told I was no longer going to have the little infant I had been longing and planning for for the past 17 weeks wasn't painful enough, I then had a mile long needle inserted through my belly and into my uterus to extract what felt like a gallon of fluid. Surprise! To top it all off they finished with a shot in my ass because of my particular blood type. I felt so low and devastated, I just wanted to crawl into a hole and die. 

Our baby had various deformities and vital organs that were not developing correctly, if at all. The doctor informed us that these were markers more indicative of conditions known as Trisomy 13 or Trisomy 18, not Down's syndrome. He explained how I was basically the current lifeline for this baby, and that it would not survive outside of the womb, or possibly even too much longer inside of the womb based on what he could see from the ultrasound. It was like we had a child on life support and had to decide when to pull the plug. We had to make what was the most difficult, yet also the most obvious choice ever. Did we want our baby to die now, or die later? There are so many things that factor into making a decision such as this one, and we made the decision that we found to be best for our family. For us, for Ellie, for the little life that was slowly dying inside of me. We decided to terminate the pregnancy. We scheduled the two day procedure for Wednesday October 9th and Thursday October 10th. 

At the time I was so angry and frustrated, I wanted nothing to do with the pregnancy anymore. I wanted that baby out of me right then and there, so I could forget about the whole thing and move on. I couldn't fathom carrying a baby 5 more days, just to have it taken away from me. As time went on, I began to have a change of heart and became more grateful. I concentrated so hard on feeling every little thing and touching and talking to my belly. I knew it was the last little time I would have with my baby. It is really an odd and emotionally draining thing to have to start grieving the loss of a child you haven't even met, or technically even lost yet. I had more questions and emotions surge through my body in those 5 days than most people can even begin to imagine. Were we doing the right thing? Was my baby in pain? Why didn't they catch this sooner? Would it have even mattered if it were sooner? The amniocentesis results came back on Monday, and while the exact diagnosis did not matter in whether or not our baby would make it, the doctor's assumption of the condition known as Trisomy 13, typically the most severe of the three most common chromosomal abnormalities, was confirmed. The good news was that this was a completely random occurrence, and while it meant that Kevin and I had simply had some really shitty luck, there were no hereditary issues involved. 

One very unfortunate reality in the decision that we made was that my procedure had to be performed at a place in Portland that was sugar coatedly named Lovejoy Surgicenter. My doctor warned me that this was technically an abortion clinic. I have grown to hate the terms abortion and termination. It isn't fair to just group every case together like that. Before my experience with Grace, abortion was not something that entered my mind often. I had always viewed it as something that I did not think that I could personally ever do, nor did I necessarily agree with it, but I have still always believed in a person's right to choose. I am now grateful that while I unfortunately had to go to a clinic instead of a hospital to have a procedure that would stop my baby from suffering any further, I at least had that choice. I understand the complexity of it all so much more, and that the statement "you can't judge someone's decision until you have truly walked in their shoes" is just so true. As we drove around looking for parking I saw an elderly gentleman outside of the building protesting with a sign that read "let your baby live." I was so angry. I wanted to stop the car and run over to the old man and tell him that I wholeheartedly agreed. That I wanted my baby so badly, I would have given anything to have it! I felt like I should have had my own sign, in a desperate plea to please, someone, something, just let my baby live. But my baby couldn't live. I guess I can't blame him for standing up for something he believed in, but that didn't make it hurt any less. Feeling judged and misunderstood by someone was the last thing I needed at a time like that. 

As I was coming out of surgery I kept asking for my baby. All I wanted was to hold my baby, and I couldn't quite understand why that wasn't possible. When I became a little more conscious and understood where I was, I asked the nurse if the baby had been a boy or a girl. Kevin and I had planned on waiting to find this out until we had received the amniocentesis paperwork in the mail, but I had no filter at the time and it just slipped out so freely, like there was something else inside of me making my lips and tongue move on their own with such a purpose. She said it was a girl, and I said I wanted to name her Grace. Kevin simply nodded and said okay. I then made sure they had taken the footprints I had demanded before surgery at least 3 times. I felt so empty. So sick, and sad, and helpless...and empty.

In difficult times such as this one, I find that it can sometimes be helpful to search for things among all of the grief and despair that you can find some comfort in. 

I find comfort in knowing that Trisomy 13 was something that randomly happened at the time of conception and that there was nothing that Kevin or I could have done to prevent this. 

I find comfort in knowing that Grace did not have a chance at life from the very beginning, making the choice to let her go a little less heart-wrenching. 

I find comfort in thinking that I suffered through something very difficult and painful so that my little baby girl did not have to feel pain or suffer any longer, if at all. 

I find comfort in believing that her tiny spirit left her body when she died, and that Kevin and I decided to donate her body tissue to research for things like cancer and diabetes. I like to think she is somewhat connected to my brother Logan, who lived with type 1 diabetes, in doing this. 

I find comfort in believing that she is somewhere with Logan. They MUST have fun together, he would make an awesome uncle. 

I find comfort in knowing that while others will undoubtedly make assumptions about and judge our decision, we know that it was the decision that made the most sense for us as a family, and that is all that matters in the end. 

Finally, I find comfort in thinking about how someday I will have another healthy baby, and while I know this new life will not ever replace Grace, our family can still grow, remembering our little girl along the way. We love you so much baby Grace.

I am optimistic that 2014 has a lot of good things to bring to our little family, and I can't wait to see what it has in store. I hope that everyone has a great year ahead of them. Please be safe, and give your loved ones a kiss for the new year while you can, even if you don't make it to midnight (8 pm is pretty much my new midnight these days, yeesh) Happy New Year! 


  1. Hilari, what a heart-wrenching thing to go through! I pray for you both that you have another little one soon.

  2. <3 <3 <3 <3 <3 My cousin went through something very similar and it just hurts my heart so badly to hear of someone else having to live through this. Just know that you are an amazing mom and woman and, while I know you've probably heard it a ton already and I know it doesn't ease the pain, this will only make you even stronger... <3 <3 <3 <3 <3

    1. I'm sorry to hear about your cousin :( no one should ever have to go through these things. Thank you, I would obviously love to grow stronger in a different way, but I totally understand what you mean. I hope you had a good holiday!

  3. 8 years ago my sister was told her baby was "not compatible with life." She was 25 weeks at the time. She, too, had to make the decision to terminate the pregnancy, and because she was so far along, she then had to endure 24 hours of induced labor. In the end, she never even got to hold him as his anomalies were beyond what she could handle. I was with her through the labor and the aftermath. There were no right words. I admire your decisions, your honesty, and your strength. You did that which was merciful, and there is no shame in that. I will keep you in my thoughts as you continue this grieving process. Thank you for sharing this.
    -- Olivia K.

    1. Olivia, I am so sorry to hear about your sister. That is so brave of you to be there for her in a time like that, she is very lucky to have you. I can't imagine going through the labor and delivery part, and I am so grateful for the choice that we had. Thank you so much for your kind words and thoughts, and I will be thinking of you and your sister as well.

  4. Hello. My condolences on your loss, my heart breaks for you and your family.

    There was an amazing and illuminating thread on Andrew Sullivan's "The Dish" blog, the thread was called "It's So Personal", and it's about families who have endured similar situations as yours. Perhaps if you feel isolated and alone in your experience you may want to read some of the entries.

    http://dish.andrewsullivan.com/?s=it%27s+so+personal Most entries are from 2009 but it's been updated as recently as last summer.

    I'm sorry you lost your little Grace. May time heal this as much as anything like this can ever be healed. You sound like a wonderful mother and a luminous human being. Grace picked the right parents, if not the right chromosomes. You have honored life and you have honored her. Peace be upon your house, and may 2014 be bright, healthy, and happy for all of you.

    -- Andrea B.

    1. Thank you so much, I will definitely check it out. It usually helps to not feel alone, as heartbreaking as it is to know that others are going through similar situations. I hope that you had a safe and happy New Years!

  5. I was forwarded your blog by a friend..As I just went through this myself. Love and light to you. I admire your courage in sharing your story. I've also begun a blog documenting my journey past pregnancy loss. messagesfromdelilah.com if you are interested. Best wishes. XO- Georgia

    1. Wow, it has really been forever since I have been on here, how embarrassing. I am pleased to know that this story is doing what I had intended though, and is still being read by someone going through similar things (although you would never actually wish this upon anyone, it is somewhat comforting knowing you are not alone.) I still think of my little Grace every day, and light her candle often. You are so courageous as well to go through this and share. I hope that it is comforting for you to express your feelings in writing, and I will definitely be following your journey. Much love, and thank you for your kind words. You are a beautiful writer!