Lost our little girl to Turner's Syndrome

Stephanie

In Feb of this year, I was waiting for my period that was showing no signs of coming. No cramps, no acne, no headache? I knew I was pregnant. My fiancé and I were not trying or planning for it, but after taking the test and getting a positive our lives turned upside down. Our first baby! We were so excited! We waited a few weeks to tell anyone. We wanted to make sure everything was going well. At 12 weeks, we told our families. Our little gummybear is what I called her then. The flicker of the little heart on the screen brought tears to both of our eyes. We anxiously awaited our next ultrasound! 20 weeks and we could find out the gender! We went in, and had a wonderful time seeing how much growing had happened. Our gummybear was now a little human! We saw hands, feet, 10 fingers, 10 toes. It was during these moments of happiness that our future was shattered. The tech told me a cyst was noticed on the previous scan, and the radiologist wanted to personally take a look. My heart dropped. I was confused. What did she mean? A cyst on me? On my baby? She would not explain further.. We had to walk into the hospital to see the radiologist. I remember squeezing my fiancé's hand, holding back tears. He was being strong and supportive as always. He told me he was sure everything was fine. I just knew it was not. The look the lady gave me when she told me about the cyst said all I needed to know. This was something severe.

The radiologist called us back, and he introduced himself and began to scan me. He was silent. For 30 minutes, I watched him go over the entire anatomy. He never said a word, and tears were silently falling from my face. He got up, and I saw his hands shaking as he walked out of the room. I burst into tears when he shut the door. Why did he not say anything? I wanted someone to tell me what was happening with my baby. The tech came in, and she sat down. She told me she was not supposed to interpret the findings, but she felt I needed to know. The radiologist could not bring himself to tell me what he was seeing. My baby had a cyst growing on her neck. The cyst was very large and contained a lot of fluid. The fluid was in her chest, pushing on the lungs and heart. This was causing the heartrate to drop very low. She appeared to have no kidneys. She said the radiologist's words were "not compatible with life." She ended it by telling me my baby was most likely a girl. I was in a fog. I could not stop crying. How could this have happened? Why am I only finding out now? I was so far along. Halfway there.. We left and sat in the parking lot, crying together.

The next couple weeks were full of appointments and worry. I had to see a fetal medicine doctor and a genetic counselor. Through testing and ultrasounds they determined our daughter had Turner's Syndrome. I looked it up immediately. 1 in 100 babies make it to birth. The doctors were always blunt. "She will not make it. You will have a stillbirth, her heart will stop. Even if she makes it to term, her kidneys are not functioning. Your baby will die." I carried hope with me anyway. I had to. I would fight for her as long as she had fight left. We named her Quinn Presley.

A dear friend ordered me a doppler so I could check her heartbeat whenever I wanted. I checked it 3 times every day. I recorded it so I would always have it. On June 17th, we woke up and did our routine. After my fiancé looked for her HR for several minutes, he looked up at me defeated. She was gone. I knew it, he knew it. We had prepared for this, but it made it no easier. I showered, we packed a bag, and we headed out. She was born sleeping the 18th, Father's Day. She weighed 1.2 pounds and was 8 and half inches long. She looked so much like both of us. I cannot express with words all the emotions I had during labor. It was unbearable knowing she was gone. There would be no crying for air when she came. I would not ever get to look into her eyes or see her smile. This is still fresh in my mind. I do not know if it will ever be far from my thoughts. I carry the loss of our sweet Quinn with me everywhere, and I believe I always will. Grief is not something that you push through. Rather, you carry it with you, it changes you. Quinn is my daughter. She made me a mom. We kept her with us for many hours. I cannot recall how long and letting the nurses take her was the worst part. How long till I am able to hold and kiss her again?

I never had a longing to have a child, and now that she was taken from me, it is all I can think about. My arms and heart and empty.

Thank you for giving me a place to tell our story. I need people to recognize her existance. She is my daughter, no matter how short of a time we had with her. She lived. She changed us. We love her. 💗🦋💗