Ashley
Mom to Rory Mae, July 27, 2010
Seattle, WA
 
My husband and I had known we’d wanted kids, many kids if we could have them. Almost three months to the day before our wedding, I discovered I was pregnant. Shock turned to fear which quickly turned to joy and excitement, anticipation, thrill. As time passed we planned, budgeted, announced to a handful of friends and family that I was expecting. We’d planned a natural birth and I was being watched over by a midwife, independent from a hospital. I didn’t have many pregnancy symptoms and I was thankful for it.
At exactly 12 weeks, just four days before the wedding, I trekked over to see the midwife, and I was especially excited because we were going to look for the heartbeat of my little baby that day. As soon as I sat down in the waiting area, a feeling of dread washed over me. Usually optimistic about the pregnancy and the baby, I was suddenly overcome with the feeling that something was amiss. We sat in the room and chatted about how I was feeling, my weight, my diet and finally we laid me down to look for the heartbeat. My midwife had a lot of trouble finding anything, and attributed it to the baby being behind my public bone but she ordered me to go over to the affiliated hospital to have a viability scan done.
 
The feeling of awfulness grew, and I only wanted my husband there with me. I knew what was about to happen couldn’t have been good. My sonographer was extremely quiet, barely muttering anything to me. I was relieved to see a heartbeat on the screen but I could tell by her lack of chatter something was wrong. She called in a supervisor to help her measure the baby’s organs and thrust a printout at me before going to get the doctor.
 

I couldn’t have waited more than 10 minutes but it felt like an eternity. Finally, my doctor came in, and dimmed the lights. I felt like I was waiting for the train to hit. He held my hand, and told me there was something very, very wrong with my baby. Many things in fact, including a huge cystic hygroma, omphalocale and a suspected heart defect. They were pre-diagnosing it as Trisomy 13 or 18, both fatal.
 I cried for days.
 
One week later, I had a CVS done to determine exactly what was wrong with my sweet angel. Just a short day later, the short-scan results were back, and we were elated to find out we were having a girl! Rory Mae had Turners Syndrome, a genetic defect that’s fairly common in modern society. She wouldn’t be able to have children, and would need growth hormones to grow to a normal height, but she could live, go to school, get married, have a career. My genetic counselor cautioned me that Turners Syndrome babies have weak hearts, and coupled with her ompahloacle she’d have a very rough first few years but her chances were decent. The tough part would be making it though pregnancy and keeping her heart strong.
 
Three weeks later, at 15 weeks we had an early anatomy scan, where we got some bad news. Rory hadn’t grown in 12 days. Her cystic hygroma had grown almost 4mm to over 10mm. She had plural effusion (fluid around the lungs) and pericardial effusion (fluid around her heart). It was suspected her heart didn’t develop all four chambers and her skin, kidneys and liver were calcifying. She never really had a chance. My husband and I went home to decide what to do. We weren’t sure what the right course of action was, but decided to wait until over the weekend to see how she was doing and if there had been any changes.
 
At 16 weeks exactly, on July 27th, we went back to the clinic to have another viability scan where we discovered Rory’s heart had stopped beating. She was an angel now, playing with all the other angels. I carried her for two more weeks, and had a D&E in early August. They gave me an ink printing of her feet that I’ll cherish forever.
 
I truly believe that she stuck around as long as she needed to. She was a fighter, she was strong despite so many things stacked against her favor. It’s been two months since she passed and I think about her every single day, especially as my due date approaches. I’m glad I got to know her for the little time I did, even though it hurts.
Ashley blogs at www.lifeasashlet.com
and can be contacted at ashley.c.vos@gmail.com
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Comments

  1. jackie says:

    …..so sad….thank you for sharing rory's story….

  2. MV says:

    I've followed your hearbreaking story and I'm so sorry for your loss. <3

  3. Maggie says:

    Thank you for posting Rory's story.

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