It’s been said that every pregnancy is different. Every pregnancy is unique. I guess that would ring true because not only is every baby unique, so is the mother. I remember telling some of my co-workers during lunch that I would NOT be getting prenatal testing done because it wouldn’t matter to me if the baby was unhealthy. We would love that baby regardless.
I don’t really remember the day I found out I was pregnant. I don’t remember taking that initial home test. I am not even sure I remember our first doctor’s appointment. Mom of the year, right? What I do remember is that being considered advanced maternal age, I was offered a nuchal fold test at 12 weeks and for some reason that I still am unsure of, we decided to go for it.
We saw her on the ultrasound. There she was, a tiny little incredible creature created by us! She was quite active, and even back then we relished watching our little daughter move around the screen. Unfortunately, that joy was short lived, as the doctor measured the skin thickness on her neck. It wasn’t normal.
What Happens Next
Suddenly I wanted to do all of the tests possible to understand what was happening with our child. Diagnoses such as Trisomy 18, Trisomy 19, and Turner Syndrome were tossed around like they were everyday words. All I heard was there was something wrong with my baby.
A few days later the doctor called with results from the blood work. She had Turner’s Syndrome. She also had additional abnormalities, but those I really don’t recall. My husband and I were shocked into silence, each of us coping with the news in our own ways. I researched. He didn’t. I wanted all the information I could get to convince myself we could care for this baby. He wanted to know what happens next.
We switched doctors and went to a specialist. It was there we learned the true extent of our baby’s “abnormalities”. Just when I had convinced myself that we would be ok with Turner’s syndrome; accepting she would most likely be under the care of an endocrinologist, we learned the rest. She also suffered from a cystic hygroma and fetal hydrops, combined, which were essentially a death sentence.
We were offered the option of terminating. That wasn’t an option for us, although I wanted to be guaranteed that she would not be in pain if we let her go on her own. Our physician guaranteed us she would not be in pain. So we gave her to God and let go.
For the next ten weeks, we went in weekly for an ultrasound to see our little girl. Every week we wondered if this was “the week” we wouldn’t see her moving anymore. Every week I isolated even more while my husband seemed to become more outgoing. We coped in completely opposite ways. I didn’t fault him, truth be told, I may have been envious of his ability to compartmentalize. I went to my office and played solitaire…over…and over….and over. I recall someone telling me that I couldn’t hide in my office forever, to which I answered: “why not”?
There were weeks when my husband couldn’t be with me at the ultrasound. Those were even more difficult. However, a coworker volunteered to accompany me. While I didn’t understand her selflessness, I was incredibly grateful to not be alone.
Near the end of our pregnancy, the doctor froze an image of our baby girl on the ultrasound screen. As usual, she had been active and the screen was frozen in an image that looked so much as though she was giving us a peace sign. That was at 21 weeks. I think that was when we knew we were nearing the end.
At 22 weeks and roughly 5 days, we went in for our weekly ultrasound and were admitted directly to the hospital. We were admitted for a stillbirth and I would later learn there was a rose placed outside our door, a sign to all that we were not taking a live baby home.
The hospital we were in had a policy that they could not bless our baby if she was stillborn, so we brought in a trusted friend who did the honors. I later learned he confessed this to be one of the most difficult things he had done in his career.
I was in labor over 24 hours. I refused sleeping pills as I didn’t want to miss birthing my daughter. 27 hours after we discovered she had passed away, our daughter was born. She was immediately removed from the room and would later be brought in swaddled and dressed in a tiny dress. All one pound of her.
I had told the nurses that I didn’t want to be by myself when she was brought into the room. There must have been a miscommunication because they brought her to me as my husband had stepped out. He reentered the room as I held our daughter and marveled at her itty bitty tiny nose.
We all took some time to hold her, me, my husband and her grandparents. I remember my father in law telling me that when we lose a baby on earth, we have a baby waiting for us in Heaven to be rocked. I really don’t remember much else from that evening.
We checked out of the hospital just after midnight and went home with empty arms. The house felt oppressive and I felt as though I was a stranger in a once familiar world. Soon after our discharge, my husband and I went to Target and inadvertently walked by the girls’ section. Tears streamed down my face as I realized I would not be able to dress my daughter in any of these beautiful little clothes.
Looking back, I remember wondering how the world kept going when I was drowning in grief. I vividly remember the day my husband went back to work and I was terrified to be alone. The anxiety and fear were overwhelming me. And the guilt. Did I mention the guilt of being a mom to a baby that had “abnormalities”? What did I do wrong? What could I have done differently?
Trust in God
God has a way of helping us through these dark times. After going to genetic counseling and being
reassured for the 100th time that her abnormalities were nothing we could have caused, we began to move forward, albeit slowly. I remember the day I began to sing again and I shocked myself that I heard the music, let alone sang it.
It took a few years, however, we went on to have healthy and happy babies. I am grateful to God and grateful to my daughter for showing me what a gift a baby is. I no longer ask people when they plan on having a child, for I have no idea what they are struggling with. And I am living proof that you can do everything right and still not control what happens.
Today I have an angel watching over our family. Thank you, little girl, for the lessons you taught your mama…until we meet again.