Rachel’s Brave Story
Rare - /rer/ - adjective (of an event, situation, or condition) not occurring very often
After being married for a few years, my husband, Riley, and I were ready to start trying for a family. In early 2017 we got pregnant for the first time right away and were surprised but so excited. We told our immediate family soon after we found out. Two weeks later, we lost the baby and were devastated. There were some minor complications that lead to a D and C. My dreams from the time I was younger were completely crushed. We didn’t know if we could have a healthy pregnancy and healthy baby. We had hope that we could, hope for our own family. We mostly kept it to ourselves, but I would let it leak out at times so not many knew what we were going through.
A few months later, we got pregnant again right before finding out I had a rare liver disease that stemmed from an autoimmune disease I’ve had since I was 19. With the guidance of my wonderful MFM doctors, we were able to bring our Natalie Hope home in April 2018. We became pregnant a third time in 2019, again quickly, and brought our second daughter, Vanessa Grace, home in May 2020.
Rachel, Riley, Natalie, Vanessa
In early 2022 we got pregnant for a fourth time, also quickly, and were hoping to complete our family. This time with Natalie being four, we wanted to tell her first to be special and so if she overheard anything she wouldn’t be confused. We had planned on telling the girls and then our families after the 12-week appointment. My first ultrasound was just before 8 weeks where everything looked good and I heard the heartbeat, but then had another miscarriage a few days later. It was confirmed on the Friday of Mother’s Day weekend. Due to the timing and the complications from the first loss, we chose to have a D and C that evening. Instead of telling family that we were expecting, we had to tell them about the loss.
We were told it is rare to have two losses. The doctor told us that everything looked good with us, and the fact we have two healthy children also gave them more reassurance. “You just have bad luck,” I remember him saying. You hear of 1 in 4 pregnancies ending in miscarriage. I was now 2 in 4. I questioned why this would happen to me. Why weren’t we supposed to have another baby? Did I have two to “save” someone else from a loss because I was strong enough to get through it? Twice?
In January 2023, we got pregnant a fifth time after quite a while. We were so excited! Everything was good, 8-week ultrasound looked good, genetic testing came back all negative and it said baby was a BOY!! We had 8 days to be happy. So, so happy.
Emotions got to me at my 12-week ultrasound hearing his strong heartbeat, he was very active, and at 12 weeks I always think they look so defined already, that was our son. When I started tearing up, the technician was so sweet and got me a Kleenex while I told her we had two losses before. I was a little nervous when she measured the neck/spinal cord area because I knew that had to be below a certain measurement to rule out down syndrome and I wasn’t sure it was small enough but couldn’t remember what it needed to be, and the blood test already told us he didn’t have it. She left the room to go over the images with my doctor. Usually, the doctor comes back in with the tech and says everything looks good. This time, my favorite nurse came and brought me to the OB appointment room to check me in and take vitals. Then it took a long time for the doctor to come in. My fear was growing, but everything would be fine. It had to be. The tests came back negative.
My doctor came in and after saying hi, he didn’t waste any time. He had concerns about the baby from the ultrasound. There were three concerns, most concerning was the way the placenta looked- moth eaten appearance or Swiss cheese like. This was a big indicator of Triploidy. It is a rare chromosomal abnormality where there is a complete third set of chromosomes instead of only two. The reason it didn’t show up on the genetic testing is because that looks for inconsistencies with each set of chromosomes and since Triploidy is an even three sets it isn’t unbalanced. Whereas with Down syndrome for example, there is only a third or extra chromosome for the 21 st chromosome and two for all the rest. Also, Triploidy is so rare, they don’t even include it on the generic genetic testing.
He explained all that to me and more. Triploidy isn’t compatible with life and there are complications for the mother not only as long as she is pregnant but also after birth. Because of that, the medical recommendation is termination. There would be more information and decisions needing to be made that the genetics counselor would go over with me. All that being said, he looked good. There was hope, he had a chance, he was a fighter. Still had a strong heartbeat, was growing on track for gestational age. Most Triploidy babies miscarry in the first trimester or measure smaller than gestational age. There was a rare chance that the placenta and baby could have separate DNA and he could be fine. We decided to take things one step at a time, gather all the information we could, and make decisions based on that as needed.
I then had a specific blood genetic test for Triploidy that came back positive but could only confirm the placenta had it. The only way to confirm if he also had it was to wait until I was 15 weeks and do an amniocentesis. We chose to wait and do the amnio. Those weeks were filled with so much prayer, tears, endless mind racing thoughts of everything. I was showing signs of being “sick” from the placenta already.
Riley went with me to the amniocentesis appointment and that was his first time seeing the baby other than the printed photos from my 12-week ultrasound. “This is so hard because he looks fine,” Riley said when we were alone. He still was active, strong heartbeat and on track with size. They were able to see one of his kidneys was quite enlarged this time. We asked questions, got answers and information, thought of more questions, repeat the cycle. The rapid test came back the next day as positive, and they told us the full results would take at least a week to come back, but it would follow suit with the same information. We were struggling to put it lightly.
Two days later, I started feeling very uncomfortable and had pain under my right rib cage. To make a long story short, I was ambulanced to the hospital where the next day it would be discovered that I had developed preeclampsia/HELPP, be induced and give birth to our son at 15 weeks, 6 days pregnant. It is super rare to have preeclampsia earlier than 20 weeks pregnant. We didn’t even have the full results from the amniocentesis yet. This time the doctor said it was rarer than getting struck by lightning.
Lucas James Schuster was born April 21 st , 2023, at 7:28pm weighing 4oz and 6.5 inches long.
We got to hear his heartbeat one last time before he was born, hold him, sing to him, get his footprints, and have some memories with him. Lucas means “bringer of light” which we felt was very fitting for him. He will always be our light, bring so much light to our life, and we will always try to share his light with others. James is Riley’s middle name and we’ve always wanted it to be our son’s middle name from our first pregnancy.
Lucas means “bringer of light”
He will always be our light, bring so much light to our life, and we will always try to share his light with others.
I was almost halfway through my pregnancy with Natalie when the December 2017 due date of our first Angel Baby came. That day was sad, but I was hopeful as things had been going well with my second pregnancy. We were not able to become pregnant after our second loss before our second Angel Baby’s December 2022 due date. So that day was really, really hard. I always could “justify” our first loss because if we would have been blessed with bringing that baby to term, we wouldn’t have even gotten pregnant with Natalie. We were meant to have her, and in turn Vanessa. The second time, I had no explanation or reason because I wasn’t pregnant again in its place. I was able to share more about this loss in time. It had gotten easier to talk about my experiences. Talking about it helped me process.
Things with Lucas were different. It was SO much harder. I was farther along, we could see him, we knew he was a boy, we had more time to plan and dream, we had reasons for the loss, the severity of the pregnancy and my health, the weight of the recommendation for the diagnosis being termination for medical reasons, everything we were faced with at the hospital, coming home and getting thrown right back into normal life even though our world was shattered. The heartbreak was bigger. The sadness still seems endless.
With all our losses, I always struggle the most with where we would have been. I’d be so many weeks pregnant, we’d have a 9-month-old right now, I should have a big belly while doing this. Especially the closer we get to due dates, as I’m writing this, we are 3 weeks away from Lucas’ October 7 th due date. Instead of getting ready for his arrival, we are doing things that are phasing us out of the baby stage. Moving more and more things out of the nursery that Vanessa still sleeps in with the crib converted to a toddler bed, debating what to do next as she was going to be sharing a room with Natalie, but we can’t bare the nursery being empty. Those types of things seem never-ending. Telling the girls about him was very difficult but has proven rewarding as more time passes. When the sunlight shines through clouds, we say Lucas is saying hi and the girls look for that often. Seeing him in ways like that is so special. I’ve also attended a monthly support group that is invaluable.
When the sunlight shines through clouds, we say Lucas is saying, “hi.” Seeing him in ways like that is so special.
What I found most helpful, and still do, was talking about what happened and him. Being able to say his name, remember him. Having people who would listen and allow me to answer questions. When people would be cautious, I would say, “It helps me to be able to talk about him. I would rather have people know what happened then have questions.” Also, it was the best for me when someone offered to do something specific because it made it easy to say yes, and I never turned down any kind gesture offered. Whenever someone said to let them know what they could do to help, it was harder because I could never think of anything, so I’d ask they not forget about us and keep checking in. As time has gone on, that has slowed down, but it always means so much.
While living my life, I knew things like this existed and could happen, but it was never a thought in my mind that they would actually happen to me, let alone three times. I try my best to always think of Lucas’ Light first and spread it as wide as I can in our family and to others. We don’t know what lies ahead for our family, only time will tell. I am brave because I survive the rare being my normal.
“I am brave because...
I survive the rare being my normal.”
