I received a phone call from my nurse Deb while at work. As you may remember, at our last prenatal appointment we’d opted to do the AFP test. I was surprised by the call because I had honestly forgotten we’d done the blood test and certainly didn’t expect to hear what she told us. “You had an abnormal result on your test.” But she was very sweet and tried valiantly to reassure me, saying not to worry because they get a lot of false positives with this test and most likely it would be nothing serious. She was hoping for a miscalculated due date or something harmless like that.
Bless her for being positive, but in my heart of hearts I knew something wasn’t right. Actually, I remember thinking, “This is it. We’re going to finally find out why I’ve been feeling so anxious.” Little did we know, we were about to find out what God had been preparing me for.
Deb made us an appointment for Thursday October 6th – the same day as our other ultrasound – with Maternal Fetal Medicine at St. Mark’s hospital (where we planned on delivering). They were specialists who would go over the test results and do an ultrasound to see if they could find a cause for the abnormal results. Scott and I tried not to worry – honestly we were more excited to find out the gender of our little one. And if our child was at risk for being a special needs child, we were more than ready to accept him/her and prepare for whatever needs our baby might have. After all, this is why we’d opted to do the test in the first place. We had this appointment at 8:30am and then were scheduled to go to our regular ultrasound with our doctor at 9:30am.
Later that day we drove down to Riverton because Scott was playing in a fall softball league with some old high school buddies. My brother Taylor played on the team too so my parents and a couple of other siblings ended up coming as well. While we were watching I told my parents about the phone call and how we needed to go see a specialist Thursday to see if there was anything wrong with the baby. I tried to tell them it wasn’t anything serious but it’s surprisingly difficult to convince people not to worry when they can hear the trembling in your voice from trying not to cry yourself.
My mom suggested we come over after the game and receive a Priesthood blessing. Scott and I thought it was a good idea, so we went over. I decided to have my dad do it. I don’t remember the exact words, but it was a blessing of comfort. Letting us know that our Heavenly Father was aware of us and that He hasda plan for us. The overall feeling I had was not that everything was fine, but that everything would work out as it should. I did feel comforted and was grateful to have the Priesthood in my life. I was also glad we’d told our families so they could be aware of our situation.
Thursday, October 6, 2011
It was a dark, rainy, gloomy morning – which did little to calm my nerves. We got up, got ready and headed to our appointment. Once we got to the hospital, it was a little confusing trying to find the MFM office – I actually had to call once we got inside to find out where the room was. When we finally found them, I had to fill out copious forms about my genetic family history, which I admit I am no expert. Then we waited. I grew more nervous by the minute, but finally we were called back. They had me lay on the bed for the ultrasound, gooped my belly up, and the technician started the ultrasound.
Scott sat underneath the big screen they had set up for me to watch – he was watching the smaller screen by the tech. I remember how worried I became the longer I laid there because the tech was so quiet. This was my first real ultrasound and it was with a complete stranger. She didn’t say anything, just continued to make different measurements. And at this point I wasn’t familiar with ultrasounds so I was watching the big screen above Scott’s head without the slightest idea of what we were looking at. Finally I asked the only thing I could think of, “Are we allowed to ask if you can tell the gender?” She kind of laughed and said of course you are. She went quiet again for a minute while she searched, then said we probably wouldn’t be able to tell because of the way the baby was positioned. I tried to laugh because I really should have known. Our silly little baby had his/her legs crossed and was positioned in such a way that the tech really couldn’t see anything to hint at a gender. I always knew my kids would be a tease, even in the womb.
She went quiet again, finished with her measurements, then stood up to leave the room.
“There’s some swelling in the baby’s stomach and head, which isn’t normal. I’ll go get the doctor and he’ll explain everything to you.”
The ultrasound technician walked out of the room, leaving me and Scott alone. I looked over at him and felt the tears budding behind my eyes. I tried valiantly to fight them off, but despite my best efforts a few tears escaped. I lay on the uncomfortable bed, resting a hand gently on my stomach thinking of what might be ailing our unborn child as I felt the bump growing there. Scott said, “Why are you crying?” And all I could reply was “Because I’m scared.” He wasn’t asking because he wasn’t scared himself – we both were. He was putting on a brave face for my sake.
After that we sat in silence, waiting for the doctor to arrive and tell us what “some swelling” meant. I knew this was it. That our lives were about to change forever. I just didn’t know how drastically.
When the doctor entered, he introduced himself, and then asked what pregnancy this was for us. I told him it was our first pregnancy, and he groaned in a way that did not reassure us. I thought he was going to explain the ultrasound to us – which is why the nurse had me stay laying down with the gel on my stomach so he could take a look himself – but instead he helped me sit up so my legs hung over the edge of the table, then he sat on his stool and looked at me. “You have a greater than 95% chance of losing this baby.”
Our world stopped as a sob escaped me. The tears that I’d been fighting were released to stream freely down my face as I tried to absorb what little information the doctor could give us at this point. I couldn’t quite grasp how “some swelling” had turned into a greater than 95% chance of losing our baby. The only thing I could focus completely on was the fact that most likely I would never meet my child alive in this life - that I didn’t even know how much longer he or she would live. It felt surreal. I didn’t want to believe it was happening. I just kept waiting for them to tell us their plan of action to save our child.
I was a little shell-shocked to say the least, so much of what he told us didn’t entirely stick. He said our baby had a lot of fluid buildup in his abdomen and neck, which was most likely caused by the lymphatic system being blocked due to not forming correctly. He guessed the cause was due to Down Syndrome or Turner Syndrome – leaning more towards Turner. It’s a genetic abnormality that only affects female’s because it has to do with one of their X chromosomes being partly or completely missing. Because we were unable to determine the baby’s gender on the ultrasound, we didn’t know for sure, but the doctor guessed we had a little girl.
He then offered an amniocentesis – which going into the appointment I was dead set against because it carries a small risk of miscarriage and I didn’t want to do anything to risk the baby. Well, with less than a 5% chance of survival doing nothing, and the huge question of what’s causing this hanging over us, we felt the advantages to the test far outweighed the risk, so we had it done. Luckily all went amazingly smoothly, though I hope that was my first and last amnio – having a large needle stuck through my stomach into the uterus really isn’t the most pleasant experience in the world. But we needed to know what risks there were for future pregnancies. If a genetic disorder was detected, we needed to know. They set us up for a check-up appointment in two-weeks time. The impression we got from the doctor was we’d be lucky if the baby made it that long.
To say we left that appointment completely heartbroken doesn’t even come close to covering the emotions we felt. Our families were pretty anxious to hear from us – as we were driving home I called my mom first and told her the news. She was so heartbroken for us. She said she’d come by to see us as soon as she could. I also called my older sister and told her. My sister and I are 18 months apart and we are very close. We shared a room all growing up and even a couple of years in college. She had two children at the time and she'd actually told me a few weeks previous that she was expecting her third. We didn't talk too long initially, but she called me later when she was able to get away from her kids so she could cry openly with me. Part of me felt guilty about having to tell everyone such terrible news, but on the other hand I'm so eternally grateful to have such a wonderful family. They rejoice and celebrate with us, and cry and grieve with us.
I called my boss as well to tell him I wouldn’t make it in. I was sitting in the car in the Smith’s parking lot. We stopped on our way home so Scott could buy The Lion King because it was newly released on blu-ray. I’m a Disney geek and we thought it might help to have something comforting. Anyway, I called my boss in tears and told him I wouldn’t make it in and probably wouldn’t be in for a few days. I was crying so hard I could hardly talk. He later told me I kind of scared him, but he understood. I guess he and his wife have had their own share of pregnancy problems, so it was good to have a boss who understood our grief.
My friend Nicole from work, the same one who noticed I didn’t seem excited when I first told her I was pregnant, stopped by after work to see how we were doing. She also had to grab some items from me so it worked out. She didn’t stay too long because she didn’t want to intrude, but I really appreciated seeing her! My mom actually arrived before Nicole left, and my dad arrived shortly thereafter, so we had people there to comfort us most of the afternoon into the evening.
Later in the afternoon I was washing my hands in the bathroom when my visiting teachers popped into my head. I stood there for a moment, wondering when I might hear from them. I’d only told them a few weeks ago that I was pregnant and it hurt knowing I’d have to tell them this news. But they were such wonderful women and good friends and I knew I needed them at a time like this.
About 10 minutes after I had these thoughts, I was sitting on the couch between Scott and my dad when my phone went off. I had a text message - from my visiting teacher, Emily. Here’s what she said: “Hey Shay. I was just thinking about you. How are you feeling today?” She certainly wasn’t prepared for the news I had to give her, but she was right there for me. Later in the evening she and her husband came over and brought us Swiss chocolate and talked to us for awhile. I asked her what made her text me and she laughed and said she just thought about me and decided to text me and see how I was doing. It was such a simple prompting on both ends, but Heavenly Father knew I needed her, and she was there for me.
I believe people are put into our lives for a reason and we had many experiences with that during this trial. Quick back-story - I graduated from BYU’s animation program in 2008. One of my fellow animation students was Tyler Stott. We are both part of an online art community called Deviantart. Before we found out about our baby’s condition, I happened to comment on some of his artwork and he replied to my comment asking how I was doing. Back to the evening of the discovery of our baby's condition, I was checking my email and saw his comment and felt I should tell him what was going on. Tyler then opened up about his own daughter, Abigail, whom they had lost six months ago. I won’t go into too much detail because its not my story to tell, but when they were 20 weeks along, they discovered that their daughter had several birth defects – Acrania, cystic hygroma and several others. In April (on Easter!) she was born and after having her for five days, she passed away at home in her father’s arms. Over the next few weeks he and I corresponded and I eventually started emailing his wife Meg. I will go into more detail during the later weeks, but I felt so blessed to have them come into my life. Their experience helped Scott and I as we faced our own challenges.
By the end of that day I was completely drained. I don’t think I’d ever cried so much in my life and I actually started getting a migraine because of it. All I know is, if I didn’t have Scott to lean on, I wouldn’t have been able to keep going. And our family and friends were such a support. Its amazing how many earthly angels are put in our path to help us through our trials! What a testimony builder that one day was!
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