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Turner Syndrome- The Story of Lillian Faye

Turner Syndrome- The Story of Lillian Faye

Hello, my name is Morgan and on August 22nd, 2019 we lost our first and only baby.

We had been trying for 7 months before we got pregnant. It was the most amazing moment, receiving the phone call that confirmed my HCG levels. We were over the moon!

I had my first ultrasound at 6 weeks to set a due date and check the baby. This was done so early due to me having missed 2 cycles in a row and could not reliably estimate from that.

At the first ultrasound they found a subchorionic hematoma. After assuring me that it was common and just needed a recheck in 2 weeks, I went home and waited patiently.

My second ultrasound was at 8 weeks 2 days. The hematoma was dissolving and our baby looked perfect. I was relieved. I wouldn’t have another ultrasound until 13 weeks and 2 days at the routine genetic screening appointment.

This was the appointment my world suddenly stopped. Nothing felt “wrong” physically leading up to the appointment. My belly was growing stretch marks and my symptoms were considerably normal. But mentally I was incredibly anxious.

At the appointment they checked the baby with another ultrasound and, as we pointed out the heartbeat and the movements, I started to notice things myself. “It doesn’t look like there is a lot of room,” I mentioned, but the ultrasound technician only responded with, “It’s probably the angle.”

Then, after awhile she put the wand down and looked at me. “I’m sorry, I’m going to have to get the doctor. I have some concerns about the baby.” It was like my ears began to scream. We waited probably 10 minutes, but it felt like an eternity.

When they returned there was suddenly a doctor, the technician, a senior ultrasound technician and a nurse in the room. They showed me on the ultrasound what they were talking about and what it meant.

My baby had developed what is called hydrops fetalis, as well as a large cystic hydroma on the back of its head. There was nothing they could do and gently explained that I’d likely miscarry in the coming weeks, if not sooner.

It didn’t take me long to consider the options and understand that no matter what I did my baby wasn’t coming home with me in 6 months. I made the appointment for a D&E that day. It was set for a week out, giving me time to consider how I felt and ask questions.

At the end of that first appointment they took blood to do the general genetic testing. Those results later came back negative for trisomy 18, 21 (Down Syndrome) and Turner Syndrome. We learned later that this was a false negative.

My last ultrasound was at my pre-op appointment. My sweet baby was still wiggling and moving, though I couldn’t feel it at 14 weeks 3 days. And its heartbeat was a perfect 167. But the hydroma measured larger in less than a week, and it is assumed the hydrops had increased as well, though it’s difficult to measure.

I knew I was making the right decision, for me and my baby.

My D&E went as well as possible, no complications and minimal bleeding. Coping with grief after was much more difficult. But through sharing my pain with those I trust and reaching out to people, I’ve found community in this difficult time.

After the procedure, we chose to have tissue testing done and our baby cremated at a local funeral home. The hospital and funeral home both tried to make everything as easy as possible. A couple weeks after the procedure, the genetic counselor called me with the results.

Our baby had Turner syndrome. This was also the day we found out she was a girl. Turner syndrome is a genetic disorder in which the second x chromosome is incomplete or missing. It only effects females.

I was told our next pregnancy us unlikely to be effected by Turner Syndrome, as it’s a spontaneous genetic disorder, not a hereditary one. While this news eases anxiety for a future pregnancy, it doesn’t ease the grief of losing my baby.

August 22nd, 2019 Lillian Faye left us and though I want nothing more than to have her here with me still, I’m becoming the person I need to be now because for her.

This is a guest post shared by Morgan.

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