I believe in mercy, and that’s what we hopefully gave our daughter.
“Not Compatible with Life.” Crushing words, that confirmed our worst fears. I remember blinking my tear-filled eyes, praying that by some chance of a miracle our daughter would survive. After 20 weeks of pregnancy, and exhausting every possible avenue of testing, willing and praying for our daughter to survive, we were faced with the reality that she would not. The cystic hygroma and fluid had overtaken her body and she was struggling to survive.
I’ll never forget sitting in the OB’s office around my nine-week appointment, excited to hear the heartbeat and see the gummy bear looking baby wiggling around. We were planning on telling our oldest 5-year-old daughter after the appointment, and I was beyond excited to share the news.
I remember immediately noticing the halo around the baby and the look on the nurse’s face. I knew something was wrong. Having had three previous healthy pregnancies resulting in four children, I knew that the baby didn’t look normal. Everything was kind of hazy and I tried holding it all together with my other kids in the room. The doctor came in and confirmed that the fluid, which they called cystic hygroma, was usually a sign of some genetic disorder. A blood sample was taken and sent off to screen for what they suspected: Turner Syndrome.
The week following while waiting for the results, I scoured the internet and read everything I could about Turner Syndrome. Devastated, worried, and panicked I tried preparing myself with the reality of complications, surgeries, and prognosis. I was heartbroken, but I’ll never forget my husband ensuring me that it would be okay, that we could handle a child with special needs. “She has a bunch of older siblings to watch out for her too,” he told me. My husband, a man of few words was holding it together for the both of us. I could see the pain in his eyes, but I remember him telling me that we would figure it out together.
The Preliminary Screening
I was sitting in my living room when they called to tell me that the screening was positive for Turner Syndrome. I remember going blank, tears rolling down my face in silence. Then I think I asked, “So, it’s a girl?” They said, “Yes, technically it would be a girl.” It was at that moment when it hit me that they expected a miscarriage soon. I called my husband balling, telling him we were having a little girl with Turner Syndrome. I could barely breathe between the sobs. Crushed. Devastated. Numb.
Every week I went into the doctor’s office, essentially waiting for my baby to die. I developed major anxiety, experiencing panic attacks in the car on the way to the appointments. A place I usually loved going to, a place where I would see my growing baby(ies), and hear those sweet heartbeats became a place of such sorrow. I’d never felt more sad in my entire life.
Still Fighting the Odds
My baby was a fighter. She continued to fight the odds despite an initial neonatologist telling us that it was a “100% miscarriage waiting to happen.” Around 13 weeks we went to another neonatologist who gave us hope. He said that it was so rare for a baby with Turner Syndrome to make it into the second trimester and since the cystic hygroma was at such a standstill, that he could see the baby going to term and the hygroma shrinking. My husband and I were so confused. We were not expecting this and left with a false sense of hope that our baby could make it.
Weeks continued on, the cystic hygroma was stagnant and her heartbeat was stable. I began to feel her move and kick and got cautiously excited. Could we be beating the odds?
Harder and Harder to Hide the Pregnancy
It’s important to note that I kept the pregnancy a secret, except for a few close friends and our parents. After the second trimester began, it became harder and harder to hide the pregnancy. After four children, your body is definitely more prepared for a baby.
It was right before Christmas when my regular doctor referred us to the Fetal Concerns Specialist at a nearby hospital. Right away our daughter looked more swollen. The cystic hygroma around her head had grown and the fluid surrounding her limbs was extensive. They told me that they did not see the pregnancy surviving and prepared us by saying that things would only get worse. Her heart would eventually give out, not able to keep up with the growing fluid in her body.
Christmas was a blur. Wrapping on Christmas Eve is usually a wonderful time for me, spent with my husband as we wrap presents and watch movies. But then I found the tiny Christmas stocking I was going to use as a pregnancy announcement for our daughter. I lost it. I was a puddle of tears sobbing on my husband. “How unfair! How could this be happening to us? How cruel,” I remember telling him. I was crushed, but I put on a face for my kids and family and got through the holidays. I don’t remember much around this time, the best I can say is that it came and went. Every reminder of family, tradition, and faith was a crushing reminder that our daughter would not be able to enjoy any of these things.
In the weeks following, I decided on an amniocentisis to determine whether there was a chance her Turner Syndrome was mosiac, making her prognosis better. It was not. She was missing the entire second X chromosome needed for survival. We met with a genetic counselor. They ensured us that this was a random occurrence and was not genetically linked if we tried again in the future.
19 weeks came and she was barely hanging on. Her heart rate was going crazy trying to keep up. Watching her on the ultrasound screen I felt pained seeing her suffer. The doctors told me that the rate the hygroma was growing was beginning to be a risk to my health. I had the possibility of ‘mirroring’ her symptoms, and with any continued growth, I would need surgery to have her removed. I could tell they sensed my need to let things happen naturally but knew that things might be out of my hands. The doctors sat us down and told us it had become a lethal diagnosis. Not compatible with life.
I’ve reasoned with myself a thousand times over about our decision to let go of our very much wanted daughter. Feeling her grow and kick over the 20 weeks of her life made that decision that much more difficult. We tried every avenue and resource available to us in efforts to help with her survival, but in the end we couldn’t do anything.
I’ve struggled strongly with my faith and pray that we did the best we could. I believe in mercy, and that’s what we hopefully gave our daughter. Those who will judge our decision, I just ask for kindness and understanding. This is a situation I don’t wish upon anyone, and I can guarantee no one wanted our daughter to survive more than us.
Delivering my daughter was heart-wrenching. Losing her life left me with a hole in my heart. No one emotionally prepares you for this. All I remember is sobbing in the hospital. Feeling so helpless and being surrounded by new life all around us in the maternity ward was torture. I won’t sugarcoat it. It was awful. Then you return home with your hormones going crazy and milk coming in as a reminder of what is missing. Leaving the hospital with that pink memory box was the start of another chapter.
Life After Gabriella
It takes a village. I wholeheartedly agree with this. We have the best parents, family, and friends in the world. Slowly people found out about the loss of our daughter, Gabriella Grace. We didn’t make a point of telling people but didn’t hide her existence either. I want her to be remembered, to know she’s loved. I still struggle with the balance of how much to disclose and talk about.
We decided to tell our children about their baby sister. My oldest, my 5-year-old daughter, refers to her as her “angel sister.” Children are sometimes the best medicine, forcing you to get through the days with routine and hugs.
Trying to shield our parents from pain was also difficult. There is nothing worse than watching your child in pain, and watching their sadness for us was hard. Our family held us together in a time of such heartache. I know it wasn’t easy for them, and though they felt helpless, their support meant everything. Our friends reminded us of the family we create for ourselves. We have the most loving support system.
Grief is an ongoing process. No medical professional will be able to tell you exactly what you need to heal, but I’ve found professionals to be helpful and necessary. Things have gotten easier for me as time goes on. There are days and certain situations that have become more difficult for me. Due dates, holidays, baby showers, holding a friend’s baby that was due around the same time—all bittersweet reminders of Gabriella.
Love your spouse, encourage them to talk and be there for each other. I’ve found that although my husband and I share the same grief, our process has been very different. The loss of our daughter was painful, and where as I find it therapeutic to talk about her, he doesn’t always feel that way. It’s painful to remember her sometimes and knowing we created a life that will never exist beyond me is hard. Fortunately, we created four beautiful children we get to enjoy—this makes the days easier.
I’m still working on self-forgiveness and healing, but one thing is certain: I have a whole new appreciation of life.
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