Saturday, June 24, 2017

Health Scare -- Trisomy 18

Edward’s Syndrome is what she called it, and the rest was just a blur. I was sitting at my desk at work the Thursday before our Gender Reveal Shower when the nurse called with results from our Panorama/Natera DNA Panel. The same test results that revealed to the host of the shower that Baby Clancy was a boy also revealed to me that he was high risk (1:32) for Trisomy 18, also known as Edward's Syndrome. The test results are 97% accurate, so our hope for a false positive was very slim.

Symptoms of Tri18 include low birth weight, small abnormally shaped head, and birth defects in organs that are life threatening. Edward’s syndrome has no treatment and is usually fatal before birth or within the first year of life. I was shocked, devastated, desperate for a more definitive answer, but even more desperate for a healthy baby. 

“Now remember, it is a screening, not a diagnostic test”, she said as I sobbed uncontrollably. I locked myself in a conference room with spotty cell service and frantically called Shane. 

He could barely understand what I was saying – but heard enough to be left stunned. He had just made his hour long trek to work, but left the office to meet me back at the house. I remember calling my Dad on my way home. I tried to explain what little I knew, and he immediately said, “I am on my way.” THIS. This if the type of parent I want to be. One that is there at a moment’s notice. One that will leave everything behind just to be by my child’s side to console them and support them.

That afternoon, Shane and I sat in the backyard and took turns crying and praying. Our day was filled with more questions than answers, lots of scary google searches, and some supportive text messages from the handful of people we confided in. We ate a crappy peanut butter sandwich because neither of us wanted to muster the effort to make anything else. A dear friend brought us dinner, and we went to the lake to watch the sun set. We both took a few days off work to be with one another while we waited to meet with the perinatologist. 

To be honest, we contemplated cancelling the Gender Reveal Shower because we thought it may be best if we didn’t know the gender. Perhaps if we didn’t know if it was a cute little boy or sweet baby girl it would help us when grieving the potential loss – maybe we wouldn’t feel as connected. The party was just a day away. The cake and balloons were all ordered. The host had worked so hard on decorations to make it extra special. 

I spoke with a sweet friend who lost her newborn baby to Trisomy 18 just a few hours after the baby was born, and something she said inspired me. She said that she and her husband knew that despite their baby's poor health, they wanted to love their child the best way they could, and that started with believing in them. Believing. How simple, yet how profound. The test results tainted our world with so much doubt that seemed to overshadow believing in our sweet baby and trusting in the Lord.

The day before the shower, I got a manicure and didn't want to get pink or blue nails. I just wanted clear or grey. I cried while the lady painted my nails. Ugh... I was not doing well with being brave and believing. 

Ultimately, we decided that if we were going to be parents then we needed to be brave, so we proceeded with the Gender Reveal Shower. Very few people in the room knew what we were facing when the blue balloons appeared from the box. I couldn’t help but cry because I knew Shane had always dreamt of a little boy, and now we had such a high chance of losing him. 

After the shower, our house was filled with diapers and baby books, but my heart was still filled with sorrow.

After a LONG month of the waiting game, two high-risk ultrasounds and a painful amniocentesis, we finally received confirmation that our baby boy is healthy. Just last week (at 27 weeks) we were released from the high risk doctors, and can proceed with a “normal pregnancy”. This experience was scary to say the least, and we could not be more grateful that Baby Boy Clancy is healthy! We can’t wait to meet him in September.

A big shout out to our closest friends and family that we confided in. We appreciate your hope and strength, and love you all dearly! 

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