Hello world! I remember this day like it was yesterday. It was August 2, 2013 and my husband Josh, me and our 1 year old daughter, Arabella were waiting to be seen by my midwife in the waiting area. 5 minutes prior we had been downstairs getting my first ultrasound for our 2nd pregnancy. They told us to head upstairs so the doctor could talk to us some more. I asked the tech ladies if everything was ok? I got a look of uncertainty and they couldn’t answer my question. My mind started to worry. Fast forward to the waiting room… “Gina” the nurse called my name. When we got to the exam room, I sat there thinking what could possibly be wrong? We waited and waited. Then, the door opened, the midwife walked in, and she was holding a massive textbook. The look on her face was one I’ll never forget. It was a face of worry, sadness, confusion. The minute I saw her face I said, “oh my gosh, what!?”
“There is something wrong with your baby,” she blatantly said.
Again I said, “what?!”
“The baby has a growth on its neck and it could have a neural tube defect or a chromosomal abnormality, which could indicate a number of things, however, we feel it’s best for you to make an appointment with genetics in Madison to find out more,” she continued.
All I could think of was there is something wrong with our baby. How could this be? Why is this happening to us? The questions flooded my brain as I tried to process this debilitating news.
Three days later we were sent to St. Mary’s hospital to the genetics counselor to learn more about what they had seen on the ultrasound. Basically, the counselor summed it up to us by stating that our baby had a 60% chance of Down syndrome, and 40% chance of it being Turner syndrome. Nowadays, genetics testing can be done with a blood test from the mother, but back then, my option was to have a CVS procedure, which was a procedure to retrieve a sample from my placenta. I would never ever suggest this procedure to anyone. It hurt so very badly as well as a chance of miscarriage, however, at the time I didn’t because I needed to know what my baby’s diagnosis was. Looking back, if I had the chance to do it all over again, I wouldn’t have done the testing. Three days we had to wait for the results to come back! It felt like an eternity waiting! They say we have 60 to 70,000 thoughts per day, well, in those 3 days, I know I surpassed that by thousands! My mind was so consumed with so much emotion. Finally, the 3rd day arrived, and we learned that we were going to have a baby girl with Turner syndrome. The doctor’s told us she would only have a 1-2% chance to survive to term. As you can imagine, I was a complete and utter wreck!
When I received this information, I had a plethora of emotions run through me and one that paralyzed me most with fear, was that I couldn’t control this outcome AT ALL! And anyone that knows me, knows I need my life to go a certain way, ok ok yes, I am a control freak! I can totally admit it. I didn’t realize it back then, but all the events that would happen in my life going forward were so interwoven and complete, only the hand of God could be a part of it all!
I am sure you’re wondering, what is Turner syndrome anyway? Here are a few facts for you!
- Only 1-2% survive to pregnancy term.
- Average height 4’8″
- Caused by a defect of second female sex chromosome
- Higher risk of heart and kidney abnormalities, hypothyroidism, and ear infections
- Difficult to conceive a child
- No cure
- Physical features include low set ears, webbed neck, scoliosis, finger and toenails turn upward. The Turner Syndrome Society of the United States
Someone had mentioned to me a place I could go to let family and friends know the progress of our babies situation. This place is a website called Caring Bridge. It is an amazing site that is free (kept that way through donations) to anyone who is dealing with situations like ours to update loved ones via journaling. People are then able to comment and show support during difficult times. Looking back, this site was a life saver for me. It allowed me to go to a place I felt comforted and a place I could really receive the support I needed at that time. Before I started, I felt we needed to name our baby. In my mind, naming her would make her very real to me, even though she already was, but I felt it was important when others may be praying or thinking about our baby to put a name to her. I told my husband Josh that I adored the name Gracie and I felt a strong sense to name her this. He liked that name just fine(I’m glad he didn’t fight too hard on this!) and so, we named her Gracie. I created her site and started journaling my journey. It was the most difficult time in my life bar none. Here is a link to Gracie’s caring bridge site. I do plan to include some of the journal entries in my blog to help you get a picture of our incredible journey.
Thank you all for reading my very first post! I am so glad you’re here!! In between telling my story about our daughter Gracie who has Turner syndrome, I plan to offer my readers blog posts about ways that I have made our home a more toxic free environment, how to make your own DIY lotions, toothpaste, etc, how to eat better, how to take care of animals using non traditional means, landscaping tips, craft tips, gluten free recipes, and more! I am excited to share this journey with you all! Blessings! Many Blessings,
Gina, The Butterfly Mum
