The Day My Choice Was Taken Away

Many women feel strongly about being pro-choice or pro-life, but my feelings changed dramatically on the day my choice was taken away. We hadn’t planned for a third baby, but when we learned that I was pregnant in 1985, our whole family quickly became excited about the prospect of a new baby.          Joshua, on life support. Dave and Sharon with Joshua, just before he went to heaven.

Shawn, my first and now 9, was born a week after we moved into our first home. We just had time to set up a cradle. Jeff, my second and now 6, came six weeks early, and again the nursery was not prepared. But this time, the nursery was ready, with a quilted teddy bear riding a rocking horse, surrounded by bumper pads sewn from twenty yards of yellow gingham check and white eyelet lace. A dresser filled with baby clothes, mostly in gender-neutral colors, but with a few pinks, just in case we finally got the baby girl that we had always dreamed about.

I was ready for everything—everything except for a neonatal cardiologist to tell me, two months before my baby was due, “No matter what we do, you won’t have a positive outcome.” A positive outcome—it took me about two second to realize that he was saying my baby would die.

I was all alone at St. Luke’s Hospital in Kansas City when the fatal news was delivered. But my husband came as quickly as he could, released from his duties as an airline pilot. My parents made the three-hour drive from their Kansas farm to be at my side and watch my boys.

As my labor progressed, two social workers came and talked to my husband and me. The doctors weren’t even sure if the baby would be born alive. He had a rare heart defect, endocardial fibroelastosis, and his heart could not pump his blood efficiently. He already had edema, and so did I. They asked us if we wanted the baby to be put on life support, or if just wanted to hold our baby until his life ebbed away. We were very explicit; WE DID NOT WANT OUR BABY TO BE PUT ON LIFE SUPPORT. I was Catholic, we wanted him to be baptized, and then we just wanted to hold him for as long as we could.

After a long and difficult labor, Joshua was literally ripped out of my body. The edema had caused his abdomen to swell, and his hard tummy was bigger than his head. There was no crying, but he was definitely alive. The doctors rushed him away to the NICU and put him on life support. In a hospital with a name that started with “Saint”, my mother had to hunt down a priest early the next morning to baptize Joshua. Later that morning, Joshua was transferred to Children’s Mercy Hospital, which had a higher level NICU.

Joshua was connected to wires and tubes, and a breathing tube was inserted in his nose. I could put my pinkie into his tiny hand, and he would squeeze, ever so feebly. But when I touched his legs, he would squirm, as if in pain. He developed “cath toes” and the nurses explained that if he got strong enough, they would have to amputate his toes. Thankfully his suffering only lasted one week, and he got to go to heaven with all of his fingers and toes intact.

The doctors called us early the morning of Labor Day. We rushed to Children’s and were able to hold Joshua for about twenty minutes. I will never forget the moment he took his last struggling breath.  Afterwards we went across the street to the Hyatt, to have a cup of coffee and compose ourselves for the drive home. A harpist was playing in the lobby, and I imagined that our little angel was hearing similar music in heaven. 

That was not the end of the story. Thankfully we had good medical insurance, and we paid the maximum “out-of-pocket” expenses as specified in our plan. At the time that was a significant portion of our life’s savings. Without medical insurance, that week would have bankrupted us.

But the hospital that took away my choice kept insisting that we owed more. Over the next twelve months, the collection letters because increasingly ugly. Our insurance company was not helpful either. Finally, an audit revealed that Joshua had been in two hospitals in one day, and the insurance had only paid for one. No pro-life advocate offered to pay one penny of our medical bills.    

ALL BIRTH DEFECTS ARE NOT CREATED EQUAL. Sometimes the most compassionate choice is to end a life sooner, rather than extending the suffering. When tragedies such as ours occur, the choice should be left with the parents, with the advice of their doctors, and in accord with their religious beliefs. Because my choice was taken away, I continue to advocate for mothers, not politicians, to make the choice when similar tragedies occur. Thank you for reading my story.