Commentary Maternity and Birthing

Having a Severely Premature Baby Strengthened My Support for Every Woman’s Right to Choose

Dallas Schubert

When our daughter was born at just under 24 weeks, we faced a choice: to let her die in our arms, or head down the uncertain and complicated road of medical intervention. We chose the latter, and that experience has only strengthened my commitment to and support for women’s access to later abortions.

When I was 24 years old I got pregnant. My husband and I weren’t “trying” to get pregnant, but we weren’t trying not to either, and we were both very happy when we got the news. I was young, and it wasn’t written into a plan, but it was very much what I wanted.

I threw myself wholeheartedly into that pregnancy, ate all the right things and exercised appropriately. We talked about names and I daydreamed about the baby growing in me and who it would be. I loved the feeling of movement. I had mild morning sickness. I was on top of the world.

At 23.5 weeks I started spotting, and in a matter of hours found myself in a downward spiral from doctor’s office to ambulance to hospital with a level 3 neonatal intensive care unit (NICU) on the other side of town. My cervix was dilating, the baby was coming, and I was diagnosed, in the insensitive language of medicine, with an “incompetent” cervix. For almost 24 hours they worked to stop the progress. I was positioned with my head lower than my feet, in the Trendelenburg position, to try to enlist the help of gravity. I was given magnesium sulfate to slow preterm labor and dexamethasone, a steroid, to speed fetal lung development. I was hooked to a monitor that showed I was having contractions that at first I couldn’t even feel. We found out by ultrasound that it was a girl. A nurse sat by my bed all through the night.

Sometime the next morning the doctors discovered that my membranes had ruptured and that it was not going to be possible to put off delivery. They also discovered that the cord lay between my cervix and my premature daughter, meaning that natural childbirth would be fatal, and if we planned to try to save her life we would need an emergency c-section.

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Whether or not we planned to save her life was not a given. Sober-faced doctors laid out in detail what our choices were. We were told that she had no chance of survival without extraordinary medical intervention. We were told that she had about a 25 percent chance of survival if we resuscitated, and that if she survived she had an over 75 percent chance of significant disability and chronic medical need.

We had a choice. We could accept what was happening—that we were losing this baby we so very much wanted, deliver her, and hold her briefly in our arms while her heart, if it was still beating after delivery, stopped. She would go, peacefully, painlessly, and we would begin the grieving process. Or we could resuscitate, intubate, and head down the uncertain and complicated road of medical intervention.

I couldn’t let her go. Lying there pumped full of magnesium, scared and tired, I couldn’t let go of the idea of that child I had become attached to over those almost six months. I couldn’t let go of my expectations of parenthood. I couldn’t accept the inevitability of grief. And so I said, “Do everything you can.” The NICU team was called, I was whisked to surgery, and we began the next stage of our journey.

The risks to a severely premature infant are many. Our daughter was born at just under 24 weeks, weighing 590 grams and measuring just 12 inches. She could not breathe on her own, and was put on the ventilator she would remain on for seven weeks, putting her at high risk for chronic lung disease. IVs were placed in veins no thicker than a strand of hair. We were told many times every day that the slightest infection could take her life. The doctors and nurses were engaged in a constant balancing act over the amount of oxygen that should be in the air pumped into her lungs. Her brain and body needed enough to survive and grow; too much could cause blindness and brain damage. At any moment the delicate veins and arteries in her brain could rupture and bleed, with the potential of death or severe physical and mental disability. I sat by her side every day, but couldn’t hold her until she was taken off the ventilator. She received two transfusions of my blood.

Gradually she grew. I pumped milk from my breasts to be fed to her through her nose. She avoided infection, there were no bleeds in her brain, and eventually she breathed on her own. After that, she learned to suck and breathe at the same time, and to regulate her own body temperature. Finally, after 100 days in the hospital, with a bill to insurance of almost $1 million, she came home, wearing a monitor to let us know if she stopped breathing. We endured months of isolation as we avoided contact with any germs from the outside.

Today my daughter is 16. She is smart, healthy, and happy. She has plans for the future; she is the joy of my life. We were lucky. We were amazingly, extraordinarily lucky. She beat all the odds. Underneath the joy of seeing how well she has done and her presence in our lives is a profound and constant relief—a relief that the decision I made did not bring her a lifetime of difficulty and pain. It could have.

I do not regret the decision I made. How could I? I have this beautiful, wonderful girl. And I know that if we had not been so lucky, we would have dealt with whatever problem or disability came our way. We had the resources and the insurance to care for her, and plenty of family support. She would have been loved, and valued, and she would have brought value to the world. I am, however, profoundly aware that the decision to resuscitate and take advantage of what modern medicine—with all its miracles and imperfections—has to offer was not a clear-cut decision ethically, or medically.

The choice regarding my daughter’s care was mine, as it should have been. It was both my moral right and my responsibility. I was her mother. She was growing in me. The complex decisions about her life were mine to make, and I made them as best I could.

I have been asked many times since whether my experience changed my commitment to and support for women’s access to later abortions. Absolutely not. If anything, it has made my support and empathy for women facing those decisions stronger. I held my daughter’s life, and the potential quality of that life, in my hands. I made a choice that was born of my hopes, my dreams, the degree of attachment I had to that pregnancy, and my expectations about motherhood. I made a choice to avoid immediate grief and pain. That choice could have condemned her to a more painful death, or a painful life. The consequences of that decision were not just mine to live with; they were hers as well. I believe it is from that very same place that most women make the decision to have an abortion, or any other number of decisions regarding pregnancy and parenting. With the ability to bear children comes the awesome and often difficult power to make decisions about that life.

I had tremendous levels of support around my choices and in the early years of parenting—privilege and the “miracle” of Emma’s good outcome ensured it. No one questioned my unplanned pregnancy. Everyone assumed her premature birth was beyond my control, not the result of bad prenatal habits or behavior. Everywhere I went, family, friends, and complete strangers affirmed my decision around her birth, applauded my strength, and labeled me a “good mother.” But in the hours I spent by her Isolette I doubted my choice to try to preserve her life, and even many years later I recognize its ethical ambiguity and how lucky we really were. Had I made the other decision, the difficult decision to let her go, would the world have embraced me so strongly? I am hopeful that it would have. If my decision had been different, if the pregnancy had not been welcome, and the considerations of my hopes and dreams and the quality of my child’s life had led me to an abortion, would society have supported and embraced me? I know that it would not have. I can’t imagine what it would have been like to have my choice taken from me, or to have endured shame and stigma from society for it. I deserved no more and no less support, understanding, and compassion than any other woman facing the complex and difficult decisions that come with being pregnant.

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