LEARNING THE DIAGNOSIS
In 2016, I was blessed to be carrying a baby that was VERY much wanted and that we spent years trying to conceive. I was so excited that the nursery was practically done by the end of the first trimester.
We decided to do an early blood test to find out the gender of our little one, so that I could continue on with my need to prepare everything before this amazing blessing came into our lives. At 15 weeks along, we found out that, in fact, we were expecting a little girl; however, along with that, we received the most earth-shattering news. They told us that she was also likely to have turner syndrome.
I literally cried for two days straight. I can attest that my husband is the strongest man I know, as he held me as I “scream-cried.” After the initial shock of finding out that my little one was not going to be “perfect” in every way, I researched everything I could get my hands on. I had doctors’ appointments at least twice a week.
SEARCHING FOR INFORMATION AND MAKING A DECISION
I scoured the internet to find the very few success stories out there. We needed some kind of hope. At 20 weeks’ gestation, after an echocardiogram and ultrasound of the baby, we found that she was not only facing turner syndrome but also fetal hydrops, a cystic hygroma, and missing chambers of her heart. If she was born alive, she would need heart surgery immediately following birth.
The hospital doctor who came in after our test results changed the game. He suggested that we terminate the pregnancy as her chances of survival were minimal. Terminate? Oh . . . that means abortion, right? We sat there as he explained how the termination procedure was done, and he wrapped it up with a “best of luck to you next time. At least, you know you can get pregnant.”
CHOOSING TO CONTINUE THE PREGNANCY
All of our hope was crushed, but not lost. Moving forward, we leaned on the amazing team of doctors and nurses at our obstetrician’s office. They were beyond encouraging as we chose to continue with the pregnancy, and they all loved the visits they got with baby Jolie twice a week. Yes, they called her by her name!
Another couple of weeks passed, and our team became concerned as my risk for developing mirror syndrome was rising. Mirror syndrome, caused by fetal hydrops, would put me at risk for extreme preeclampsia and even heart failure.
As a result, I was monitored by our doctors every other day, and on the days I did not go in for monitoring, I took my blood pressure at home. If it came to a point of life and death for me, we knew that inducing labor early was an option.
EMBRACING OUR TIME TOGETHER
What I knew for certain was God was making the choices, not me. Jolie’s life was never my decision to take. We just embraced this little girl’s every single day. She got more belly rubs and prayers than you can imagine. She got further in the pregnancy than any doctor predicted. We were told that babies with turner syndrome usually do not make it past the first trimester.
That was even more of the fire that I needed. There was a reason she made it this far. Maybe, she was meant to be born alive and change lives, or maybe, she was going to pass and still change lives. No matter the outcome, we knew her little live would have impact, and it did. She changed my life. She changed the lives of our families and countless friends, too.
SAYING GOODBYE AND NAVIGATING LOSS
At 25 weeks’ gestation, Jolie’s heart gave up. We delivered her peacefully. We held her. We cried for her. We loved her, and we put her to rest in a place where we can bring flowers and read her the book, Blueberry Girl, just as I did with my older two girls.
I promise you, she was very much alive. I felt her kicks. I could see her growing and changing with each ultrasound. I held her body after she was delivered. She existed. She matters. She changed our lives. Human life like hers deserves protection and dignity, and that is what we gave her. We call her our sunshine girl.
Just this past September, I delivered a healthy baby boy at 8lbs, 4oz, at just over 39 weeks.